This is a follow on of sorts from my previous rant. I need to get straight in my head, and here, how I feel about how some families are treated by the services that should be providing support.
I expect many doctors, therapists and support workers would love all their patients, or clients, or whatever they are to them, to be ignorant sponges, with ignorant sponge children. Ignorant so we don't have the nous to question. Sponges so we soak up everything they say.
We are expected to trust in their expertise, safe in the knowledge that they know better than we do and we are safe in their hands.
In an ideal world, we are all a blank canvas, with the same potentials and the same ability to learn.
We do not live in an ideal world though. We are all different, some of us are more complex than others, some are more questioning. Some of us, for whatever reason, are not round pegs that fit neatly into the round holes provided by society. We are the awkward square pegs, trying desperately to round off our corners so we fit in, or trying to carve our own square holes.
We started our autism journey (sorry, that sounds so clichèd, but like so many clichès, it is a good description of what it is!) as ignorant sponges, not knowing what was happening, not questioning anything we were told. We thought we were good parents, but clearly we weren't good enough, or we wouldn't be experiencing the issues that were making life so very difficult, so we took advice on board and followed it for a long, long time, believing that things would get better if we followed the tried and tested strategies that were suggested to us. We made a valiant effort to make it work, but ultimately, the strategies we used would never have worked.
Over the course of the next couple of years, we started to question the things we were told. We quickly came to the realisation that the experts didn't always have the answers, which is fine, nobody has all the answers. But not just that. When we, the people who live with our children and are in a position where we have to learn quickly what works and what doesn't, come up with possible answers, it is very, very difficult to be taken seriously.
In my experience, there are two types of expert (when using expert, I mean anyone in a position that means they are working with the child or their family, so it may be a teacher, a support worker or paediatrician).
The first is the kind who welcomes parental input, someone who believes what we are saying and tries their hardest to understand. They are open to our suggestions and input. They are happy to work with us.
We are lucky enough to have a GP that falls into this category. Without her support and understanding over the last few years, we would not be in the position we are in now, confident of how we handle things.
The second kind tend to be a little more rigid with their approach. There is often an assumption that parents are causing their child's difficulties, which no doubt some do, but when faced with a more complex child, who does not respond to a one-size-fits-all approach, or who presents in a way that is unusual or unexpected, rather than thinking outside the box, or involving parents who all too often have found the answers, there is a tendency to obfuscate the issue and twist facts to fit within the narrow criteria of the manuals that they work by.
This is damaging, as many of us have learnt, not many children or adults, even those apparently with no issues, fit the instruction book. There are more usual behaviours which are easy to identify. But there are the unusual as well.
There's a saying in the medical world: When you hear hoofbeats, think horses, not zebras.
Basically, look for the simplest explanation. If it looks like a cold, chances are it's a cold.
When it comes to PDA and autism, when it doesn't present typically, this is currently a problem.
In many cases, PDA is the obvious answer. PDA is the horse, not the zebra.
But because the manuals don't currently include PDA as a valid diagnosis, many experts will ignore it as a possible explanation and go around many convoluted avenues to prove that the behaviours are caused by attachment problems, or poor parenting.
As part of the investigations, parents are expected to complete parenting courses, allow strangers into their houses to observe the child and how they interact within the family.
As I explained previously, our experiences of both of these did not go well.
Whilst the Webster-Stratton does focus on communication problems, the videos that featured heavily during the course showed, on the whole, parents disinterested in their children, parents having to be taught to let their child lead, to spend time with their child rather than disengage. Parents who have to be shown how to have a relationship with their child.
Whilst our son can be very difficult to be with, we have a very good relationship with him, we enjoy his company, we encourage his many talents, we interact with him in a way that suits him, we respect him. To use another clichè, we know what makes him tick. We know his strengths, we also know his weaknesses and triggers and work hard with him to overcome these.
During his assessment period though, all this was overlooked. The assumption that we were just another dysfunctional family made the whole process very traumatic, and has left us with a distrust and unease around the very people who I believe we should have a good working relationship with. Unfortunately, we are not alone in this approach. I know many families who were treated in this way until the point where the child was diagnosed, and beyond.
The parenting course was another example of our knowledge being completely disregarded. We were clear that it was making things worse, but we were not allowed autonomy over our own family circumstances without being seen as obstructive to our son's care, even though following through with the course was clearly not the right thing for our son. We quietly backed out, naïvely hoping for no ramifications. We backed out to use the strategies that work well with our son, as we had explained to anyone who sat still long enough to listen to us.
Using our autonomy and refusing prevention support (for reasons I spoke about in the last blog post) was also seen as obstructive, even though we know beyond shadow of a doubt that this particular intervention will have no positive consequences for our family. We know that because throughout the assessment process, we had people visiting us at home, with the sole intention of building up a relationship with PDA boy so they could see what we see, but they couldn't see him, no-one sees the real boy as he is so very aware of having to fit in. Even his grandparents can't see the full extent of his behaviour, although they are learning to recognise some of his subtle tells.
As I spoke about in my first post, some children mask extremely well, something which most experts cannot (or will not) recognise. This is massively to the detriment of the child and his or her family, and it is these families that are often assumed to be fabricating their child's difficulties, or exaggerating the violence and stress we live with, because the child does not fit the expectations of the experts.
There are some experts who recognise this. Notably for me is Dr Luke Beardon, whose blog posts have been printed and shared by many parents (myself included) trying desperately to be listened to and taken seriously.
I am hoping for a shift towards more experts like this, within the NHS so they are accessible to all who need them. The number of experts are there, so this shouldn't be a funding issue, what is needed is a change of attitude amongst those working with families like ours.
In this resource limited time we live in, lack of funds is the most used reason I've heard for the way families like mine are treated. But I have a sneaky feeling that the cost to society is far, far greater by forcing families to jump through unnatural, manufactured hoops in order to qualify for support. The cost of putting countless families through parenting courses that many parents know full well won't help must limit the real help that can be given.
I was often asked what we wanted from CAMHS. Put on the spot like that, I found it incredibly difficult to come up with an answer.
I have one now though.
I wanted them to acknowledge that we know how to handle our son.
I wanted them to acknowledge PDA in a more helpful way than "Well, it's not in the books".
I wanted them to believe us.
I wanted clear cut advice as to what to do when my son threatens to kill himself, and demonstrates how.
I wanted to know they were there, standing shoulder to shoulder with us at a time when we needed it, in a way that I know they can with clearer cases.
From an organisation whose sole purpose is to lend expertise to our troubled children, I don't think this is too much to ask.