Saturday, 12 April 2014

The Good, the Bad and the Ugly

There was a documentary shown last week called Living with Autism, in light of World Autism Awareness Day. It was really lovely to see autism being discussed on mainstream TV by someone who really understood autism and could explain to the majority of viewers how the autistic mind works. It was also lovely to hear it being talked about in such a positive light. But I don't think it really showed what "living with autism" is.
There has been a fair bit of talk on autism support forums about the show, and the general response-which I agree with- is that whilst it was great to have a show that wasn't all doom and gloom, there needed to be more of the negatives shown in balance to the positives. Because living with autism-whilst being joyous and fascinating at times- is heartbreaking and soul destroying at others. And I don't feel you can show one without the other, because that just isn't autism. It is one thing mentioning on a programme that an autistic child may get upset if you move an ornament, but where was the explanation of 'upset?' The explanation of a meltdown? Explaining that 'upset' to an autistic child is not just asking for the ornament to be put back in it's original place, or a few tears. But that child may lie on the floor and scream for hours, may bite themselves or others, may not be able to communicate why they are so upset.
Whilst it was fascinating to see these people with autism talk about their interpretations of various experiments, where were the children who couldn't be taken to the shops without screaming? The non-verbal children, parents talking about needing to use visual timetables just to leave the house, the work it takes just to get eye contact, the battles to get the right support in school, the sleep deprivation many autism parents face, the very limited diet, the complex sensory issues?
The programme mentioned that 80% of people with autism can't live independently-that is a massive, massive statistic. So I think talking about the reasons why and day-to-day life would have been really good-especially as there was a fair amount of time spent on those with savant abilities, when only 1 in 10 people with autism have such abilities.
I know of many people who had asked friends and family to watch the programme thinking it will help them understand what life can be like for them, only to have the impression that autism is fascinating (which it is) and something to be celebrated (which it isn't always) and just a differing personality to the majority (possibly, but it's called a disability for a reason-it's disabling to various degrees.)

So, I thought it might be good to write my interpretation of what living with autism means.

The Good
- River doesn't lie-he has no concept of deceit so will openly tell you if he's doing something he shouldn't.
- He smiles and laughs and giggles about things we don't know about, several times a day.
- He can learn things very quickly as he has an excellent (probably photographic) memory.
- He doesn't judge people. He doesn't care if people are fat, thin, rich, poor, from a different culture or class, clever or not. That's probably my favourite thing about River.
- He doesn't feel the need to conform.
- He has no hidden agendas. You don't have to worry what he really means, what he's really getting at- he is straight to the point (to a certain extent-see next point.....)

The Bad
- River remembers phrases from certain moments in time, and will repeat them at random times when he doesn't know how to express himself. Which is very confusing for an outsider. For example- if he hurts himself or is upset he says, "Bella is finished, ok? Bella is finished" whilst crying. Bella is a character from the Tweenies. I assume that at some point in the past, he was upset at a Tweenies episode finishing and has associated these words with feeling upset.
Another example- if he wants a toy that another child has, he will say to me, "I want thank you, please." This is because he knows to say thank you when someone gives him something, so he thinks if he asks for " thank you" he will get the item. He can't just say, "I want that toy."
- River's amazing memory is sometimes a hindrance. River has over 50 small toy cars, most of which were bought 2 or 3 at a time from car boots and charity shops over the past couple of years. River knows exactly which ones were given to him at the same time. So if he's playing with one car, he will usually say, "I want the light grey car and the dark orange truck, please" (Or whatever the corresponding cars are.) If you fail to produce these, the fallout is horrific. This is the same for many of his sets of books, crayons, pencils etc.
- His diet is limited. River doesn't eat the same food as us. Most of his food is beige (although there are some exceptions) and increasing his acceptance of new foods takes a lot of thought and planning, baby steps. So he used to eat a lot of bread, toast and sandwiches. We started getting him used to rolls, pitta bread, bagels, brioche, croissants to increase his tolerance of different foods. It also takes lots of  thinking out of the box (he may not eat spaghetti bolognese, but he'll eat bolognese in a sandwich and on a pizza.)
- Getting dressed can be tricky due to sensory issues. He wants deep pressure a lot and things to be tight. So he often gets upset and says, "squeeze your toes, squeeze your other toes." He means that he wants me to squeeze his feet to help him feel more secure. You can imagine how difficult this was when he was non-verbal and couldn't express what was upsetting him.
- He doesn't understand that you have to wait for something. He doesn't understand that porridge has to be cooked before he can eat it, that I have to put the fish fingers in the oven as they're Not Cooked Yet. I can't tell him that we're going to the shop after breakfast, as he says, "finished your breakfast, I want shoes on please" and wants to go immediately.

The Ugly
-He doesn't always remember that I can't read his mind. So he needs the toilet, but forgets that I don't know that, then has accidents. Many children with autism are fans of smearing-it's a sensory thing-but thankfully River doesn't do that (yet)
-Whilst having breakfast on holiday recently, a waitress tried to engage River in conversation. His reaction: he clamped his hands over his ears, looked at Daddy and loudly declared, "I want 'goodbye' please!" Quite funny, but also quite rude!
-It's not just social and communication skills that are affected. They are many, many people with ASD who also suffer from co morbid conditions, including ADHD, SPD (sensory processing disorder) DCD (developmental coordination disorder) epilepsy, Tourette's, anxiety, OCD, Bipolar, hypermobility, bowel disease, immune disorders, mental conditions.....the list goes on.
-The ugly is other people's prejudice. The people who shake their head or roll their eyes when your child is screaming in the post office because he doesn't understand why we're standing still (queuing.) The people who don't want their children to play near your child because your child runs and flaps a lot, makes a constantly droning sound, and has the odd screaming meltdown - and therefore may be "unsafe." The people who don't "believe" in autism, that think it's down to bad parenting.

So yes, there is plenty of good. But there's also the bad and the ugly, and we have to accept and acknowledge all three if we're really going to talk "living with autism," as that is the reality!


  1. An excellent post. As a former Special Education teacher, I said exactly the same things. An interesting programme but one which only scratched the surface. An opportunity missed.

  2. I remain in awe at both your parenting skills.

    I also remain in awe of River as he continues to progress and develop more and more skills.

    You're right to highlight how difficult it can be though - most folks only see the surface (good or bad) and don't realise it's a 24/7 life - for River and for those around him.