It's becoming more and more clear to me that some of the main problems us autistics face is that there is a language barrier.
This harks to my previous post about unspoken rules, and is evidence (to me) of lack of understanding on both sides, it is not (as we are told so often) that those on the autistic spectrum are impaired or defective, it's not that we can't communicate, in my experience, and I wonder if it's more a problem from the (yet again) rigid expectations from some non-autistic people who cannot see that their way, their body language, their communication methods, are not and should not be the only and right way, which then clash with the differences some autistic people have when it comes to communicating resulting in mixed messages, frustration and confusion all round.
Don't get me wrong, this is not a post designed to bash non-autistic people, but when the majority of autism literature eagerly points out our failings, our impairments, our less than ideal behaviour and how to cope with it, it's only fair to point out that it goes both ways, and many of our difficulties are directly caused by neurotypical people misunderstanding us, or making ill thought out assumptions.
I've already talked about my difficulties with CAMHS, and my light bulb moment of understanding my own processing differences, and I think this is a perfect example of the misunderstandings we face all the time.
CAMHS is an organisation full of people who should be no strangers to autism and its various presentations, yet they are well known for failing many of our autistic children. They of all places, as the main option for dealing with the mental health problems our children so often struggle with, should be aiming to have a high understanding of autistic behaviour, and I'm not just talking about the stereotypical stuff, I'm talking about the differences autistic people experience when it comes to emotions, facial expressions and body language, these are all things that are commonly misinterpreted as us telling stories, exaggerating and straight out lying.
I have been in appointments with a therapist and have calmly, matter of factly even, told them about violent episodes and suicidal behaviour. In these instances I wonder if they were looking for vulnerability on my part, desperation, fear? These are all things I feel, but by the time we have spoken to anyone, out of necessity I have formulated a script in order to get out the information, without it being muddled or muddied by me searching for the right words or phrase to best describe the things we're worried about, wanting to get out as much information as I can to help them to understand us better, and if I let go enough to cry, I wouldn't be able to say a word, useful or otherwise, but in doing this, I haven't followed the acceptable NT rule book, I have come across as cold, perhaps clinical, or too calm, and the manner of getting my words across has left people, not just CAMHS, but most professionals we have worked with, believing there's something off about us and our situation.
It's frighteningly common for these misunderstandings to occur when an autistic child also has an autistic parent, and it leads to incredibly difficult situations where mothers are accused of fabricated or induced illness unfairly. We were lucky in that respect, but we are the owners of a long letter proclaiming us obstructive because of various reasons, but when you delve into those reasons with an autistic filter, it's very easy to see how this happened, and it's all down to me not quite getting the rules that NTs can easily follow. It isn't fair that we may disclose our own autism for reasons of clarity, and it is then misunderstood and used against us, particularly in situations when those we are with should have a better understanding of autism than your average person.
Talking to other autistic people, including my sons, it appears to be familiar territory when we talk about not being believed, when ill, when feeling overwhelmed, scared, hurt. PDA boy opened up to his CAMHS therapist (no mean feat considering how difficult he finds this), but as he did so with a cheerful look on his face, he wasn't believed.
When it comes to autism, facial expressions don't necessarily match the emotion we're feeling. This can be confusing, but it's not an insurmountable problem, it's easy enough for someone to take in the simple fact that What You See Isn't Always What You Get™. Just as it's easy to take on board how common it is for autistics to script out things they need to say, so it may not be delivered in a typical way. It's also easy to learn that body language may be off kilter, so whilst lack of eye contact and eyes darting around may be a sign of guilt or a shifty character in non-autistics, in autistic people this can simply mean anxiety or feeling uncomfortable. It's also important to realise that to us, a lot of NT behaviour, small talk for example, and a tendency towards ambiguity and asking open ended questions, can be really stress inducing and confusing, reducing our capacity to "act normal" in circumstances where we are then judged if we are unable to come across well.
This is a huge problem for our children in school where behaviour, even when the child is diagnosed, is judged as naughty, manipulative, deliberately obtuse, and all sorts of other delightful labels that prove that knowledge about autism is a hell of a long way off from being at an acceptable level, with all too common phrases such as "we're all a little bit autistic!" and "they have to live in the real world, they need to make an effort" completely undermining what autism means to us and our children. These attitudes succinctly point out that the world is not quite ready or able to accommodate us, and the onus is on us and our children to change into socially acceptable variations of ourselves, which then creates more confusion because then..."you don't look autistic!".
It would surely be so much easier, would it not, for anyone working with us or our children to have a basic knowledge of autism, our emotions and body communications, to save all the unfortunate and downright harmful judgements that cause damage all round.
To be absolutely honest, it would probably be possible to impart this information in just a few lines, all it takes is for people to read it without an agenda of distrust.
1. Autistic people may not display typical body language, don't make assumptions based on non-autistic standards.
2. Autistic people's facial expressions may not match their emotions, this does not mean they don't care or they're not feeling what they say they are, and it may be a coping mechanism to get through a difficult appointment.
3. Be aware that many autistic people, again as a coping mechanism, need to script what they say in order to speak fluently. Do not assume that scripting means it is exaggerated or fabricated, and again, remember those facial expressions may not match your expectations when talking about very difficult subjects.
There, I managed to say in three points the main things that would have helped us through the various appointments we had over the course of several years, and would have helped teachers to understand PDA boy a little better and led to him being supported. In terms of understanding enough to make all those appointments productive, these points could have made a huge difference to everyone involved.
An academic knowledge of autism does not make someone an expert. Combining their expertise with listening to those who live it, or live with it, on an individual basis and taking it at honest, face value, not making pointless comparisons to how non-autistic people are, is a valuable tool for anyone working with autistic people, no matter what their role, and could have the potential to improve the lives of autistic people and their families immeasurably.