Hier vind je de nederlandse versie van deze post.
Welcome to my blog, I have rather neglected it, but it happens, But at last here’s a new Post.
If you’re here for the first time, hi I’m Robin and I have Autism, so everything that follows is written from my point of view, so I hope you do not assume everything what I say is the truth, but I ask of you to take it in, and think about it, and get out of it what you can use.
For quite some time I ‘m working with professional (mental) aid providers, and a number of things come up again and again, now I can only speak about my own professional aid providers but I believe that these things also true for caregivers.
Aid Provider/Caregiver: I visit someone and I want to tackle a number of things together, but it does not seem to be possible to get started right away, and eventually it seems only in the last 10-25% of the time I’m there we are able to do something, and I have a feeling that I lose so much time, and I’m not useful, and therefore everything I want to accomplice takes so much time.
When I hear this (time and time and time again), I can only think: Do you not notice how much work you actually do, and how much it costs us to “just” live in this world.
Firstly, you have already done 50-80% of your work/help, before you even put a foot over the threshold, the fact that you visit, and will be there for a period of time, is the biggest part of your work, or maybe better, that it has ensured, that the recipient of your help (let’s call him/her from now on the autist), has done a lot work.
What you as aid provider/caregiver may not realize enough is that, you may be the only “real” human contact for this person, as such before you even enter, the autist:
must test his or her voice, because the rest of the week it’s not used (at all),
must remember how to behave again, so you don’t get in an argument with the visitor,
must check the house, whether it is sufficient in order (only in that part where the visitor might come ofc)
must check is the self-hygiene enough in order to have the visitor over,
must check, do I have clothes on, that still meet standards of this visitor.
In addition, before you come in, the autist must put their thoughts in order, assess what is important and what is not, this process already starts before you come in, but is often only finished once you are there, because it can no longer be postponed. Those who think visually, just like me, have to translate the images to words, so that those can be uttered.
What you also do, is our forcing us to put things in perspective. And that alone is perhaps your most important function for us. And you are already doing that by just being there and listen, and of course react if you disagree.
Let’s dive a bit deeper into this “putting in to perspective” thing.
Because we are not very good at distinguish essential matter from subject matter, and also tend to fail at cause and effect that is interlinked with it, do we live in our “own world” as the documentation refers to it.
That is why we need other people to put our thoughts into perspective/to ground them/to normalize them/or give it a name that works for you, what this means is that we have to organize our thoughts but we cannot do this ourselves (on our own alone), we need a stimulus from our environment, that does this for us, or forces us to do it ourselves.
Think of a working environment, where your colleagues chastise your improper behavior, or a social (school) environment that corrects weird acting mercilessly.
But in the case of many adults with autism, there is no functional or remedial environment to speak of, the family has often already just accepted the behavior, and work is either (too) adjusted or no longer possible, and friends or social contacts are seldom or only with other people with autism, so a aid provider/caregiver is needed to fulfill this function.
To put into perspective or correcting this “own world” is usually done by just talking with a autist or perhaps better letting the autist talking (flushing/spewing) about what is at that time in his/her mind.
But you will have to properly listen to it and if necessary, correct on the “Insane” or unhinged ideas. Mental notes have to be taken of repetitive matters/subjects and in your eyes important matters/subjects even though those are casually mentioned during the spewing, so these things can be discussed directly after spewing or on a next visit.
We must organize our thoughts, so we can discuss those, but often this can only be done, after that the head is emptied out, by spewing, of all the garbage thoughts and ideas.
The act of translating (for the visual thinking among us) and organizing, because we have to talk to you, on its own often ensures that thoughts are put in perspective, essential matters and subject matters are separated etc..
In addition, it is important that you discuss/and check the general functioning of the autist and go deeper into it / stay on it, if that fails.
The autist will not tell you that we are not “successful” because we do not want to enter any conflict on our own.
Most of us will not blatantly lie if you directly ask for how it is going, but always beware of the creative among us, with how you formulate your question because “how did you manage with eating and drinking?” can work with some but not with others, because for those “others” you may need to ask “Have you been eating and drinking enough and healthy every day at the regular times?“.
We almost never lie when we are asked for something directly, but some of us are very well able to answer in a way that they are not lying, but you will think we say something completely different than we are actually saying. So do listen to what is said not what you think is said is a solid advise when checking in on a autist.
But all this makes it (possibly) so that the autist keeps up, with his daily hygiene and environment, so you’re doing your job already before that you come in, because during the contact moment there will be questions and checks on it and these have to be answered “honestly” and to avoid conflict.
Control lead to self-control (energy to perform the tasks needed) just to not get told off by you.
As an extension to that, it is important to now and then make a round through (around) the house, just to see how it really is with the hygiene and environment also in the spaces where you normally do not come (and do check cupboards/closets), because that is why they must be kept acceptable as well because you are even checking those.
Now I understand that this is often not done because “That infringes the privacy or so”, but we do not experience that in the way you do, So just ask if you can make a round through the house the next time or in a month (you give the autist time to think about it if he/she wants to allow you and if necessary to clean up the mess) and please, please do this, because this little round gives you so much (information) to work on with the autist, to really help him/her.
As an example: You make a round through the house, and you run into a pile of “something”, what peeks your interest and the client responds (with flat energy) “I’ll need throw it away soonish, just not gotten around to do it”,
then you know that it is not a problem, it is under control.
But when there is an energy release, blocking it out of sight, or redirecting your focus, or just a high energy/emotion reaction,
then you know we have a problem with it, there is frustration/anger/shame because we have not managed to solve this ourselves, and we suffer from it, we are extremely bothered by it, that is the core of the high energy response.
And what do most of you, not helping of course, but stepping back “Because clearly you have gone too far and infringed”, No You didn’t go too far you did not infringe, We do not experience it in that way, we have shown you what is bothering us (in our limited way), Now Help us with this.
Maybe not now immediately, but later when the energy has lowered again, or maybe in a few weeks if it going generally better, but it can also be, because the client has learned that you are going to help them with it, when is the only thing that is not clear, it is suddenly possible to it ourselves.
So when you encounter during the spewing, or putting it in perspective, or checking, or the round, a lot of energy from us, I’ve GOT something, you need to get started with, because here is something the autist is very much bothered with, even if it is a trifle for you and a total side issue, energy means HELP ME, and NOT go away you are infringing my privacy.
So all this is done by coming by and listening (to the spewing and the “ordered” thoughts/attention points) and respond If necessary, by discussing and checking (even the mediocre) things time and time and time and over and over again and again, making your rounds through the house once in a while.
So the autist can “trust you” that if we do not do it or are not able to do it properly, or does not go well, you will “see” it and we will receive help with it.
And then after all that “hard” work you have already done, in the last 20% of your contact moment you can even work together on something new.
A little thing that also ties into this, is the frustration of the aid providers/caregivers, that they are trying to create a “better” situation, but the autist does not seem to like work on it or fails at it, I think this is because of the following:
We people with autism can’t free up energy to get into a better situation
But we can free up a lot of energy to avoid / to stay out of a worse situation .
I have been trying to explain this for a long time, but it does not seem to come across,
Now I have talked to someone recently who said something, what makes it much clearer to me, but probably also makes it much easier to explain it to you as well.
And that is that it has to be Real, for us to be able to do something with it, so why can’t we free up energy to get better from it, Because that situation is not “real”, It still does not exist as it were,
that we can free up a lot of energy to avoid getting worse at, because the current situation is “real”, It exists, and so it must be retained (at a lot of if not all cost).
As an example to make it clearer, I like to use the following example:
If you want to let an autistic child to behave,
It rarely works it you say; If you behave then you get a treat with the two o’clock tea,
But if you give the child a treat and say; This is your treat, we will keep it in this (transparent) container (to keep fresh), you can eat it at the two o’clock tea, BUT if you do not behave until then, you must give it back to me, then the chance that the works is much better.
In the first version the treat is not real, where in the second case the treat is “real”, and it is the child’s, it can be checked if it is still there, so energy can be freed to work for it / retain it.
So it works great for adults with autism too, how it can help you, I do not know exactly, but I know that as a aid provider/caregiver you can have a lot from this,
Think: cleaning up a messy/dirty room because a “not real” clean tidy room is better, does not work.
But retaining a clean tidy room, can work, as long the autist suffers enough from the clutter (or is made to suffer enough by your grumbling about it) such that the cluttered room is perceived as “worse” than the current “real” clean and tidy room.