Undiagnosed 6-yr-old, mother at end of tether!

hi,my name is michelle,i have a son with autism who is 6, i had to fight to get a diagnosis but i can put you in touch with a consultant who could help you,also have you heard of the family trust fund

Hi again, Luca's mum,

Luca's mum said:

I try and explain things to Luca as much as I can, but often my temper gets the better of me (due to time constraints), and then we get locked in a battle and I end up feeling really guilty.

The one thing that I had to face is that I can't afford having a meltdown myself at the time when my daughter needs me to be strong enough to help her. And by avoiding/preventing this I can also reduce the guilt, which is the strongest thing that drags me down. So you may also want to improve this bit, so that it was easier for you to be with Luca when he needs it.

A good strategy is, when you are in a situation that makes you anxious, to think of the worst thing that may happen now. Like, if you are in a hurry but just can't get your son do something, what is the worst thing that will happen if you are late? Or, if he screams in a supermarket, what is the worst thing that can happen? In the majority of cases, it won't be anything really bad - just people getting mad/upset, you missing something, etc.

And you can also think what you yourself would feel/think/do if you saw someone else in your situation (like what you'd feel or do if someone's child was screaming in a supermarket). Again, you may be surprised to find out that you'd be quite fine with the majority of situations about someone else.

All this may help you to take things easier and stay calmer. Besides, you can try to think on your feet and, say, call people and let them know you are late and ask them if other options are available, or come up with an alternative arrangement to get somewhere on time, etc.

Basically it's easier if you believe there is ALWAYS a way out and these little tricks can help you beleive it.

I know, I may have not faced any serious misbehaviour from my daughter, so this advice may be difficult to follow if, say, your son goes on thrashing supermarket shelves or hitting people in the face for no reason. But, anyway, I'm sure that by looking at it from the side you may still be able to put it into perspective.

I just wish he would be like other children and just do as he's told, and often I don't have time to go through a lengthy explanation of why he should do something, but a tantrum ends up taking even longer!

The other thing I had to face with my daughter is that she will NEVER be different. You can't cure an autistic child, it's just the way he is and you need to accept him the way he is and love him the way he is, without wanting him to be someone he's not. It's not easy, and it is too easy to feel guilty about doing it wrong, which is natural. But you can just remind yourself about it sometimes and treat him as who he is rather than as who you want him to be but who he's not...

Hating your child and loving them at the same time is fine, it's just human nature, although we often get feeling guilty about it because it's not something acceptable in our society. All emotions, however strong, pass and things get easier when put into perspective. So, reflecting helps as well.

Another thing.

I failed to find that book I mentioned. But I think I actually may have seen it somewhere on the internet in articles about Applied Behaviour Analysis (ABA).

I am personally not familiar with this discipline, so can not endorse or disapprove it. But you may want to learn more and decide for yourself. Or ask others who have used it.

They analyse child's behaviour, what circumstances/events led to it and what results followed, etc, to see the function behind each behaviour (what each behaviour was for). Examples of functions can be seeking attension or gaining something material, escaping something, getting sensory input, etc

Then they devise a strategy for each type on how to reduce/prevent behaviour and how to deal with it once it's happened. So, they don't deal with just the actual behaviour, they deal with the purpose (though not quite the reason) behind it. Say, whatever a child did to get attention - hit someone, screamed, etc, they use a strategy they devised for attention seeking behaviour. And whatever a child did to escape a situation or withdraw from it - hit someone, screamed, etc, they use a strategy they devised for escaping behaviour, etc

And how they do it is a range of behaviour modification technics.

There are lots of books about it (you can try searching  by keywords on Google books to get a preview of each book where you can read some pages and make up your mind before you buy!) but I haven't read any, so can't recommend them, sorry!

Hope that helps...

And sorry again, if anything I say sounds patronising or offensive in any way.

Do let us know how you are getting on!

Not really sure which avenue you have gone down so sorry if you have already done this but, try going to your GP and asking for a referal to the peditrician, in my experience their waiting lists are far shorter and they might be able to give you some idea of what you are actually dealing with, with your son.

Secondly, you say punishing him. Have you tried simply removing him from the situation and not rewarding him with cominication when he does something wrong, and positive reinforcement for every little thing regardless of how little he does right? Therefore he seeks appropriate attention.

Hi to both Cats, and thank you for replying and letting me know I am not alone with this. I know my son is not at the extreme end of the spectrum, so I should be grateful, but it is hard, all the same. 

Colincat - my son also behaves better for other people than for me (although not at school!), but I will definitely have a word with our friends before we go to visit.

OneBlackCat - you are so right about the understanding thing. I try and explain things to Luca as much as I can, but often my temper gets the better of me (due to time constraints), and then we get locked in a battle and I end up feeling really guilty. I just wish he would be like other children and just do as he's told, and often I don't have time to go through a lengthy explanation of why he should do something, but a tantrum ends up taking even longer! It is a long, long learning curve and I still feel at the bottom of it. I will try and find the book you recommend - thanks for that.

Feeling a bit better today - let's see what comes... 

Found one book - "A short introduction to Attachment and Attachment Disorder" by Colby Pearce. Very good book on the subject, with a description of what attachment is and how it develops, different attachment types, representations of attachment disorder and advice on how to deal with it, an example of one boy with his difficulties and progress goes on through the book and gives a good illustration. The book is short, but nevertheless has lots of to the point information, so I do recommend you read it (even if your boy doesn't turn out to have an attachment disorder after all).

But I still think I saw it somewhere in a different book where it was written in more details about attention seeking behaviour, its types, how to recognize it and see beyond this behaviour. I'll keep looking, but maybe i've given it away to someone to read, sorry!

Hi,

So sorry to hear about your situation!

One bit in your post

Luca's mum said:

I am trying to set clear boundaries, but he doesn't seem to learn - the behaviour doesn't change. Instead, he resents me for punishing him.

makes me think that he's trying to tell you something with his behaviour and you keep reacting to behaviour rather than to what stands behind it and thus get him wrong, so nothing changes.

A few things from the top of my head (and please excuse me if anything I suggest looks stupid, patronizing or even insulting, it's not my intention!):

- Does he understand why he needs to do what he's told to (like, it's not just that you are being mean to him, but that there are good reason for it)? You can try and explain it to him explicitly even if you think he should know himself, and see if it makes any difference. In some situations my daughter will get upset and refuse to do something until I explain her why it's needed, like why I want her to switch off a noisy toy at midnight  - not because I don't want her to have fun playing with it, but because I worry that the neighbours might wake up and get very angry with us, that they must be tired and want to have a rest, so will be very upset if we don't let them to, that I would love it if we could be as noisy as we want to, but we can't now, etc.

- Does he know how his behaviour affects other people involved, which emotions it causes in everyone including himself and you? Again, even if you think he does, try explaining it to him in details, with examples, etc, and see if that makes any difference. With my daughter it also help if I first explain it all to her and then ask her what she would feel if someone did to her what she's doing to others.

- Try to understand his feelings and reflect them back to him, like say that you see he's very frustrated because he wanted to do this and that and you didn't let him to, and that you see he's now also upset probably because of thinking you hate him and are ashamed of him, etc. Just state what you see/think he's feeling. It may help him to agree/correct what you say and go further and tell you what he needs and why (although he may not be consciously aware why he does it himself, so don't expect him to always know his own motives!).

- Can you see beyond the behaviour? What it his behaviour aimed at? What he needs? There was a good book, where it was all well explained, but I don't remember which one. I'll have another look and let you know, if you want to.

I get really upset when we go out and he refuses to do as he's told - it makes me feel like an idiot for not being able to control a 6-yr-old! I feel like no-one wants us around and I can't take him anywhere without being really worried about his behaviour. 

That's it, try explaining him how you feel and why (and be honest!), that you get angry and upset not because he's bad and worthless, but because you are worried that the others will not want you around and it's important for you to be accepted by them, etc. Not more important that him, but important nevertheless. Or, if it makes you feel more like being insulted and rejected by him, explain it too. Or if it's about being afraid of others shaming you for not being able to control a 6 year old, tell it too!

It may sound daft, but for many kids on the spectrum such things don't come naturally and they keep misinterpreting behaviour, intentions and words of other people.

So, basically, try to understand him and be supportive.

I think he's trying to get your help, rather than trying to intentionally piss you off by being defiant. Although some kids on the spectrum do like it to make people angry (well, it looks fun and it works all the time, so is predictable and safe!) but mostly because they can't empathise or don't understand that being angry is no fun for the person who's angry.

There was a great advice in one of the books, and I keep reminding it to myself when I get locked in a battle of the wills or get overwhelmed with my own issues:

above all, just love him, try to think what it would be like just to love him, rather than parent him, and if the picture that comes to you is different from reality, think why.

Sorry, none of the above are quick and ready-to-use solutions.

Hope someone else would be able to give you those as well!