A dialogue about autism. Broken or not?

I belong to a yahoo group about parenting. Something that came up recently about whether it's good or not to have a diagnosis for a child with probable autism. I wrote that I thought a diagnosis was helpful. Here's some of the ensuing conversation.

Questioner: “I understand where you're coming from; and if that's what it *takes*, then fine. But did you need a diagnosis for that? Wasn't it obvious that he thought differently?”

Me: Yes, it was incredibly obvious! That’s not what I needed the diagnosis for. I needed it because I didn’t understand just how his thinking was different.

Having the words ‘autistic spectrum disorder’ gave me a handle to go and do some research and find out exactly what the characteristics of ASD. For example: he screamed a whole lot for a year or more. So I needed to know what was behind that. Is it a characteristic of ASD that he needs to do something with his voice, or is it that he not handling the uncertainty and thus is expressing his anxiety? (FYI it’s the anxiety).

Is that not true of every single person on the planet? No two people's brains function in the same way. I think a lot of parents assume their kids will "think" like them/act like them/BE like them. But they aren't little "us's"---they are completely and amazingly NOT "us's". (that's hard to figure out: us's? uses? usses? grammatically, it would be we's or wees Making up plural words here. )If we look at our children as different, from the beginning...and forever, we can understand them *all* better and work on finding a way through with a better attitude.I mean: it's *not* just aspie/autistic kids that should get this gift! All children have brains that function in different ways, and certainly not all need diagnoses!

Absolutely. No one is the same. You just have to do one of those personality tests to see that you can quantify the obvious – In the Myers Briggs scheme I’m an INFJ – my husband is ENFP. It’s helpful to us to be able to understand each other better so that we don’t fall into the easy pit of thinking his messiness is laziness, or my organisational skills are arrogance.

My daughter is very different from me. She needs heaps more friends around than I do. She hates dancing, whereas I would have given my right arm to do ballet lessons (although on second thought that wouldn’t have done my ballet skills much good...)

However, with all our differences though, there are basic similarities in human child development. Eg. We expect every child to walk (eventually), unless they are missing their feet or have some muscular difficulty etc. We expect every child to use the toilet eventually unless they have some bladder issue etc.

The things that are missing from the development in autistic children are the things we don’t even think about like – responding to and being able to use: facial signals, tone of voice, gestures, following gaze to find something, following a point. Most of the non-verbal relationship skills that babies under 18 months develop automatically, autistic kids lack. Why do they lack them? Because for whatever reason, their brains are not connecting in normal ways.

My biggest issue with the aspie/autistic stuff is how much is being tried to FIX these kids. They are not broken. They just Are Who They Are. We can choose to work WITH them or we can choose to try to FIX them. Working WITH them will have such sweeter benefits!

There are a few things to say. Firstly, numbers of ASD children has increased greatly in the last 20 years, such that they now say that 1 in 160 children is ‘on the spectrum’. Of course, levels of intensity vary greatly. So someone has to ask the question: why is this? And how can we stop the increase?

Secondly, if you want to use the word ‘broken’, I think they are broken – in the same way that if your kid had a problem walking at the age of 10, you could consider something ‘broken’. ‘Broken’ only refers to not being the same as the majority – the same as what we would consider normal/usual.

I’m not saying there’s anything bad or wrong with being broken. Just that whatever it is is not working as well as one would expect, given the regular state of the world. And if you can do something about it, why wouldn’t you?

Why do we do surgery on club feet and hare lips? Why do we find ways to balance body chemistry of children with diabetes? Because ‘fixing’ these things helps the children who have them work in the way most others work and relate to others better.

Autism looks a little bit different because you can’t see a physical difference, and it’s not life-threatening in general. But I would argue that relationships are the key to a happy and fulfilled and joyful life. And if someone is lacking those basic relationship skills because their brain has not had the opportunity to get ‘wired’ in that way, why wouldn’t you want to do something about it if you could?

The limited research that has been done on autistic (mostly Aspergers) adults (three major studies) shows that only about 10-20% are able to hold down a regular job. Less than 10% have a friend or intimate relationship. Less than 6% live independently. Over 80% suffer depression and other mental health issues. It’s not a great scenario for an autistic kid. But if you can do something to help that kid live a happy and joyful and relationship filled life, why wouldn’t you?

Thirdly, frankly, my child did need ‘fixing’. There are different ways ASD affects people, but when my child was diagnosed at 3, he had screamed all day every day for months. He couldn’t go in or out of a doorway without screaming. Noone could look at him without him screaming. He couldn’t understand a simple concept like “we’ll have that later”. He couldn’t answer a question or make a simple choice without screaming. He didn’t have one child he liked or played with. He could speak, but he would only recite scripts from TV shows. He talked about Thomas the Tank Engine all day (when he wasn’t screaming). He was visibly anxious and unhappy. He needed help – more help than I knew how to give.

One simple thing was changing his diet to exclude gluten and casein. Within three weeks he was happier, brighter, more connected. It made a big difference. Starting RDI therapy made another big difference. He still has a long way to go to building his relationship skills, but he’s well on the way and he’s absolutely gorgeous and adorable. I love him to bits.