Seeking Guidance?

Yes.

Is that enough, or shall we dig a little deeper? Maybe the latter is the best course of action considering my ‘yes’ could be perceived as (understatement approaching) controversial. I maintain my awareness that you can simply stop reading here and that is your prerogative. It’s just a choice.

Yes, I know there is a need for greater understanding of our various diagnoses (and for me that is of autism). I am not disputing that. Yes, I know there is a necessity for the education of those who are supporting anyone with additional needs. Of course. Yes, I totally get that it is a pain and a nuisance (along with many other things that it is) when you are fighting for recognition of an issue and keep being pushed from (as many refer to it) ‘pillar to post’ (albeit without there being the presence of either). It is frustrating. This is also not in dispute.

I am one who shares a neurodiverse wiring with many of you. I have my own hurdles and battles to manage every minute of every day. Do they fight me? Yes. Am I disabled by them? In many ways, yes. But one thing I am fed up with witnessing (professionally and personally) is when a diagnosis is weaponised and used as an ‘excuse’ as to why some things will be ‘permitted’ from the ‘diagnosed one’. This is even worse when it involves a child ‘diagnosed one’ as what we put in place during their younger years will impact (hugely) their adult life and their perspective on (and ability to cope with) the world.

In my own experience of working with children and families who have additional needs for many years and with the levels of need in my own family, all the autistic people I have ever encountered also seem to have varying levels of Oppositional Defiant Disorder (ODD). Because this is the case, should we then adopt a (in my view, totally ridiculous) stance where we allow anything they want to happen happen (or (similarly) not happen) simply because they have ODD (or demonstrate ODD, if not diagnosed)? Good grief. Please let’s not do that. Oh my.

I would (and do) argue that most humans refuse to ‘do as they’re told’, or welcome too much specific direction. Many humans will be reticent to following any instructions although (I tentatively suggest that) for the non-autist/non-ODD human, this is likely (usually) less of an intense issue and more a mild frustration. No human likes to be told what to do or not do by anyone else…but with us autists, too much ‘you will’ or ‘you won’t’ or ‘you must’ will be (as they term it) ‘red rag to a bull’. If you don’t believe me, I’m cool with that. I do suggest you try it for yourself. Why not do your own experiment? Watch the reaction of those who are non-autist/non-ODD when you tell them what to do and compare it to the reactions of those who are autistic/ODD. The experiment I have suggested is fraught with danger however, as many varying reactions may ensue, and some might be intense…but it’s worth a dabble if you need to create your own evidence bank of information from which to continue to learn about the human race. I am (nearly) always an advocate of creating one’s own evidence bank of information. It is how I navigate life with humans (albeit in my ‘trial and error’ approach to it).

My belief is that it is all about control. So much of the time it (in fact I’d dare to say that by ‘it’ I am referring to most things in life) is all about control. However, whatever the wiring of an individual, we (as humans who share a planet) need to wake up about our ways of supporting or helping those who are autistic of have ODD, or indeed any other identified additional need. This must happen before we make the ODD or autism or whatever other label responsible for things that can be supported more positively.

You’re experiencing an increase in high level behaviours? Highly likely. If left unchecked, and given the covering of “Oh, they do that because they’re autistic and have ODD”, what will happen when they attack someone as an adult because their default behavioural pattern is to feel a certain emotion and then lash out (as one of countless examples)? You notice that these high-level behaviours are more prevalent after the individual has been given a direct ‘order’ or ‘instruction’ and so you avoid making any demands of them because you fear the fallout? Highly likely. They learn (and in the cases of most children, they learn ridiculously quickly) that reacting how they naturally have done previously lessens your demands on them. That’s a win and sets a path for them to follow again. They are then (often) able to manipulate scenarios and situations to avoid being given any instructions by another and feeling more powerful in their own control of all around them. It is a frequently occurring outplaying of events. I have done it. I do it (albeit less now I’m more self-aware) and am continually learning to modify my behaviour and responses to life.

Are the individuals at the centre (the ones who are displaying high level behaviours) always aware of what they are doing? Of course not, and for more about The Meltdown click on this link. But even though that is the case, the individual at the centre will hard-wire in responses so these are their default reactions when they encounter something to which they will defiantly oppose (and that is whether they do that through behaviours or shutdown or manipulation).

Instead, surely, we MUST help the person in the centre of it learn to identify their emotional response and work with them to find (and try out) ways of managing themselves when the takeover happens. Surely, we need to support them to see what is happening and (as far as we can) explain it and then move away and move on to allow them processing time. Often children understand more easily when they see similar behaviours exhibited by another child and they will (often) be the first to explain that they are not behaviours that are acceptable. It is a different process if one is living it to if one is watching it. But we need to at least partially understand both processes to be able to support those with autism/ODD.

Education is vital in this. How we learn about the individual (and do please let me assure you that while we may all share some ways or traits, this will never ever be a one size fits all approach), how we then equip ourselves to support the individual and how we then help the individual to learn are imperative processes. Without this education and exploration of appropriate support for the individual at the centre, bedrooms, classrooms and other places are trashed and there is a huge level of destruction (which also negatively impacts the self-esteem of the person at the centre of (and who effectively is) the tornado). Often, physical harm is caused too and usually this involves lashing out at those who are nearest and dearest. Yes, that’s a weird compliment and maybe one you’d rather not have, but it is a compliment, of sorts.

Anyone who is autistic or who supports another who is autistic (whether they have an ODD diagnosis too or not) will know, beyond a ‘shadow of a doubt’ (whatever one of those is) that they will never witness the simple following of instructions of the person who is autistic/ODD. If that is witnessed, it is most likely the individual is in some level of shutdown and so is just complying because they haven’t the energy to react in ways that would be more ‘real’ for them. This kind of shutdown response too causes serious internal harm and was my default as a young child.

However reasonable or rational you may think the instructions you are giving to the autist/ODD person bears zero relevance. It doesn’t matter how reasonable it seems to you. That is your view, not theirs. Keeping this in mind can help with how to approach such situations.

The one to whom you are giving instructions is more than likely going to refuse or (in so many cases) is going to do it differently (even if this results in the same outcome). Alternatively, they’ll manipulate the situation, so it is slightly altered, even if this is in terms of the timeframe in which the request is completed. They are seeking some control, and they will find it. Even if you think they’ve done as you asked without questioning you or without complaint, either they pretended to but didn’t or they did it their way.

Is this because they (and by ‘they’, I mean we) are being difficult? Sometimes, maybe…but I’d suggest more frequently it is because it is an opportunity for the individual to gain some control. Us autists live in a world where for most of the time, we either feel out of control or things around us are controlling us or impacting us in such a way that we are not able to control them. Presented with an opportunity to have a measure of control, oh my. Yes, please.

But there remains the issue of how we help to direct the autistic/ODD one. What are we (you) supposed to do? There are several models to work with…some will work for some of the time and others for other times and scenarios. Behind each model however, there MUST be no hint of manipulation on your part as the instruction giver.

Clearly, we cannot allow an autist/ODD person to walk into a road without them learning they must stop, look and listen. “They don’t listen to instructions about having to stop, look and listen because they have ODD” doesn’t ‘cut the mustard’ (although why you’d want to cut mustard, I have no idea). It is preposterous to allow the label the power of not teaching the one with autism/ODD how to cross a road safely. If they don’t learn, there will come a day when they have an accident or incident involving harm of some kind to themselves or another person. They HAVE TO learn.

One approach is to share (toned down, initially – let’s not over-do the drama or catastrophe element as that won’t help either) accounts of (effectively) social stories, which are those stories that help the child/adult see things happening to another person. It makes it less immediately about them and means they can have a perspective about it that doesn’t involve reacting about it. As they are asked what could be done to keep the person in the story safe, they will (most likely) have the answer. Leave it there. Don’t push it. Just leave it as a social story and say no more. At this stage, it is more impactful to not then relate it to the situation you are training them about for them. Just tell the story and leave it. Repeat the story so it is familiar but keep it as about someone else (ideally a named person).

The social story about crossing the road becomes more relevant when there is a road crossing situation in real life. The story can be used to ask the autist/ODD individual what happened in the story they have heard about several times. Also, ask them what they think they need to do (if it needs articulating and for some, it won’t…in fact pushing the articulation of it might cause further ‘push back’ and this is why I say each individual needs treating as exactly that, an individual).

In another real-life example, there are dirty plate all over the bedroom, wet towels on the floor, clothing all over the place. The child/teenager/adult refuses to tidy it up having been told to do so. “I’ll do it for them because they are autistic and have ODD” is a response that will perpetuate the issue. I am very aware that what I will suggest doing will be not welcomed by many. I do get that. But your alternative is to nag or shout or scream and give reasons why it must happen. You might try to tell them all that will happen if they don’t do as you have said and yet you find yourself still faced with the same behaviours from the autist/ODD individual. Good luck with that, but if you choose that route, I can’t even begin to help with other suggestions and that is your choice. We all do what we need to in the best way we know how at the time.

What would I do? With all I know about us autist/ODD responses and ways now, I would have a calm discussion about smelly clothing (because it’s been damp) or stinking towels that feel hideous when used. I would also have a chat about insect invasions and then leave it at that. Use a social story to explain what happened to someone else who had that much of a mess in their room (but please don’t exaggerate, else all power is lost, and you will (likely) never convince them).

If the autist/ODD individual is impacted positively by that, marvellous. Job done. If they continue to take no notice…here’s the biggie…you might need to leave it all as it is. Yes, I did write that. “But what about the fact they’ll go out smelling so badly?” Okay. That was the choice they made. “People might say horrid things to them.” Yes, and when they do, you have the discussion again that this can be avoided by putting towels on the towel rack and dirty clothing in the washing bin/washing machine. Harsh? No. It is real life.

“But what about the ants or the fact I’ll have no clean plates to use?” Okay. This might be the only way they will learn. And when they do learn it this way, they will (more than likely) do such a dramatic shift of view about how clean their room needs to be that you will never have to ask them again to clean anything. In fact, many times, those teens who wouldn’t clean become cleaning obsessed. Weird, maybe…but true.

It might seem harsh as a plan of action, but if it how autists/ODD induvial learn, the best support we can give them is to help them learn the way they need to learn for it to have the greatest impact. I have learnt this way through my relational encounters of varying kinds with all kinds of people. Until I’d experienced for myself the things I ignored when people warned or advised me, I didn’t learn. Once I had experienced it, I learnt, and I learnt in a much better way that could be achieved through theory alone. All humans are like this in one way or another (I believe) but the intensity of this learning process for the autist/ODD is a whole other level.

The real world awaits where you will not be there to run around your child trying to keep them safe/clean/healthy. They must be taught how to stay safe/clean/healthy and maybe we’d be better supporting them if we realised they will need to experience some things the hard way before they learn. And do you know what? That’s okay. We will help them through it.

When it proves you were right about the ants/the comments about them smelling/whatever else, please never ever, ever, use any variant of ‘told you so’. You’ll be back to square one and ODD will kick in with such force, it will be harder for them to learn what is best for them.

We support those who are autistic/ODD by equipping them (us) for life in the real world. The world WILL NOT accommodate to the needs of the diagnosed one. Not fully. Not ever. But we can help the autist/ODD individual to learn (at their speed and in their way) the lessons that will enable them to be as independent as they can be with the needs they have. But please, please, please never just use “They’re autistic/ODD and that is why…”. There is a place for that ONLY when it is accompanied by real learning that will support life for them on this planet.

I realise this message might seem harsh, and it is always your choice to try other ways or nagging/chasing around after them, but I fear you will not have much success. I wish you well with whatever route you try to take. And us autist/ODD-ites, will continue to do our best to learn how we respond, where we make things harder for ourselves and where (eventually, by the time we’re a bit older and hopefully wiser) realise it might be an idea to at least consider learning lessons through theory rather than harsh experience. And for those who live with autists/ODD-ites, ‘protecting’ or ‘supporting’ them, buy preventing them from learning the only way they will actually learn effectively isn’t (I suggest) ‘protection’ or ‘support’ at all.

We have labels that enable us to understand our barriers and needs. That works if we use this information to learn about ourselves or try different ways of managing self (with awareness of our triggers). Ultimately, we might just be able to empower ourselves (as best we can) to be the best we can be, rather than using the labels as an excuse for whatever.