Hysterical child :( Here goes...

Good evening gang, my name is Nina and I'm 25 years old; please kindly bear wth my very long post.

When I was a student, I had a friend who worked in a school as a support teacher to an autistic boy, and what always struck me about his stories was how terribly aggressive this child sounded - back then that didn't tie into my stereotypical view of what an autistic person should be like. Now, some 5 years later, I am mum to a 3-year-old boy named Alex, who was diagnosed with autism a couple of weeks ago, and his aggression is an aspect of his condition that I find the most difficult to deal with.

It wasn's a surprise - we were almost sure that he was autistic for at least a year beforehand, and he showed definite abnormalities since around 14 months. So it was more a confirmation of what we had already expected. I guess it's taken me this long to ask for help on here because I've gone tthrough my entire life telling myself that I'm strong and relying only on myself, but in this case, who am I kidding? I don't know anything about this and don't know how to fight anymore.

Alexander knows his numbers, colours, shapes and the alphabet in two languages and can operate a tablet and pretty much any mobile phone --- yet he does not speak in sentences or use any clear words. All the seperate single words he says are uttered in his own special way and I only know what he means because I'm used to hearing them or because they are heard in context, he also loves to imitate animal noises and repeat the same incoherent sounds over and over. He definitely has problems understanding speech too, though he is starting to understand more, albeit mainly orders and instructions - a flow of speech or anything remotely resembling a discussion makes him either walk away, babble over you or even cover his ears. In exactly the same way, he will simply walk away from any activity that does not interest him.

I don't know if this is typical for an autistic child, but Alex is actually very cheeky, smiley, giggly and playful, and he laughs a lot especially if he's enjoying a game. He will make eye contact and persistently ask adults for help if he needs it (even strangers!). He is affectionate and will hug and kiss us, though he also sometimes kisses inanimate objects, which leads me to think that maybe his affection is not tied to real emotions?

What is absolutely AWFUL about him - and this is when I feel that the world is about to end - is the fact that he spontaneously goes into meltdown when he does not get his own way. If a magical day goes by when all of our interests match up with his own, he is the loveliest child to have around, but as you can imagine, that's almost impossible even with a child who isn't on the spectrum because, well, kids need to be told stuff all the time!

A few examples - today we got on a bus and there were no seats, so I strapped him into his buggy and said he needs to sit there for now because there is nowhere for us to sit together (of course, he probably didn't register this because it was a flow of speech, but I talk to him all the time anyway!). What he did instead was scream at the top of his lungs (into the face of a sleeping newborn in the pram next to his!!) , arch his back, wave his hands and kick his legs.

Another example - he knows the local area like the back of his hand and he knows what road leads to what place and has very specific preferences as to where we go and what route we take there. If we happen to not go where he thinks we should be going, the same thing happens - he screams as though he's been scalded, falls face down to the ground with no regard to anything/one around him; if I try to pick him up and carry him, he arches his back trying to make me drop him, kicks my stomach, hits my face, grabs my glasses and throws them on the ground and so on.

It's this sort of scenario pretty much every time things don't go his way. Luckily, he is usually quite quick to recover from these hysterical outbursts and seems to act like nothing ever happened 10 minutes down the line. However, sometimes an episode like this can shape our entire day and he will carry in being a nightmare child, screaming at everything. Funnily enough, very occassionally, he actually calmly settles for a no and doesn't go mad about it. Rarely, but it happens.

I can deal with anything, but the aggression is one of those things that I'm really struggling to accept. I don't know if it will pass as he develops more, and I am mortified that he will carry on acting this way into adulthood. I am so scared that he is going to remain aggressive and that he will never talk properly or live fairly independently or fall in love or you know, do all that stuff which people off the ASD spectrum take for granted.

If there was one word I could use to describe Alex, it would be inconsistent. He is inconsistent about absolutely everything he does. Some days I feel like things are moving forward, and then the next day it's the apocalypse again, and these neverending ups and downs are becoming so difficult to deal with and I feel so, so alone and worried about the future. But hey, who isn't?

Thank you so much, if you've read this far, I'm sorry for sounding this emotional, but I'm just grasping at straws here and I thought that a good way to start really learning about this is by talking directly to people in simialr situations, who are probably a lot more experienced than me!

Have a lovely Sunday and all the best to everyone.

  • I don't use visuals with my son much either. I find them really good for tasks that have a lot of steps but for single bits of information he seems happy with it verbally so long as I'm very clear.

    He has definitely improved in terms of angry/upset episodes since his speech and understanding have improved. I'm able to prepare him for things more and he's a lot more accepting of the word 'no' now I can explain the reason why. He also used to really struggle with leaving anywhere but now I can use a timer or just tell him when the big hand is on the 12 on the clock we're leaving and he's fine with it. He can also understand incentives. It just gave me a lot more options to prevent it from getting the stage where he feels the need to throw himself and get upset.

  • Thank you so much for your kind words an suggestions. Every case seems to be so unique, that sometimes it feels as though they may as well be different conditions! Carrots, I agree, if the quality of communication improved, so might these aggressive episodes - we are currently waiting for speech therapy, both NHS and at his nursery, but I will definitely be having a look online for ways I can help him out, thank you! Also tried the rug-under-arm manouvre today and it worked a treat. Did your child with ASD improve once communication improved, and did you see a gradual decrease in the aggressive outburts? Also, thanks for the little tips! We do leave the house equipped with snacks, drinks, toys and my phone has more Alex-apps than my own on it (though he does just prefer to mess with the settings, look through the pictures and watch videos of himself doing stuff - splashing in the puddles, feeding the ducks, playing on the swings and so on...)

    IntenseWorld, funnily enough we have tried the picture cards a number of times, at the advise of his health visitor, but sadly I can't say that they were a success - he took a quick glance, fiddled the card in his hands, put it down and walked away, like he walks away from anything that he doesn't find interesting. Although I do think he is quite visual generally, he seems to respond much better to things like gestures and tone of voice as a substitute for sentences that he doesn't understand. And, on the bus for instance, I think he does aknowledge the situation, but becomes hysterical because he does not approve of it and because I will not let him do what he wants. Afterall, I do understand exactly what he wants, but he thinks I don't because I'm not letting him do it! I often wonder if it's autism grouped with a rotten temper!?

    Misschief, if it's anything, I feel as though a real breakthrough in communication has occured with Alex over the past few months. Up until the age of 3, it has felt as though I've had a one-and-a-half-year-old for the longest time ever and he kept going a step forward and two steps back. So I hope that your little guy also begins to grasp some new things very soon. It's such an amazing feeling...yet you often catch yourself thinking "I'm getting excited about what his peers have achieved about a year and a half earlier and their parents just took it for granted!" But hey, every small victory is such a miracle :) But I definitely agree with you that having to carry and fight these kids all the time is becoming harder as they get bigger, which is why I'm praying for further changes soon.

    Thanks again, everyone. Wishing you all a good week.x

  • I would urge anyone with this issue to try PECS (http://en.wikipedia.org/wiki/Picture_Exchange_Communication_System) straight away.  The screaming is frustration that cannot be communicated any other way.  In his mind, he feels that his reaction will let you know what it is he wants.  He has not learned that your mind is separate to his and that you don't know his thoughts and feelings.

    eBay has them cheap (http://www.ebay.co.uk/sch/i.html?_sacat=0&_from=R40&_nkw=PECS+autism&_sop=15) and they also have social stories (http://www.ebay.co.uk/sch/i.html?_odkw=PECS+autism&_sop=15&_osacat=0&_from=R40&_trksid=p2045573.m570.l1313&_nkw=social+stories+autism&_sacat=0) to cover virtually every scenario you can imagine - and what they don't have you can make yourself.

    Autism means a communication deficit, so you are expecting/hoping an autistic child will learn or understand the same way a neurotypical child will.  You need to give him an alternative form of communication, break your sentences down into shorter instructions and information as otherwise it will just sound like noise and he may understand far less than you imagine he has done.  You also need to pre-warn where possible (preferably with PECS) e.g. that the bus may not have seats so that he is expecting this could be the case.  Even if it's not what he wanted, at least he will have had an idea it was coming and you may get a less strong reaction.

    Pictorial communication is much more easily learned for an autistic person than verbal information, which is confusing.

    http://www.autism.org.uk/living-with-autism/communicating-and-interacting/communication-and-interaction.aspx

    People with autism need predictability and when they feel out of control they react.  The younger the child the more frequent and extreme the reaction can be.

  • It sounds like you have told my life story Nina, except my son can not speak even a single word. My son was diagnosed in August, he was 2 years and 10 months,now coming up for 3 years old next Monday. I have the same worries as you, and  many other parents too I expect. My son is in the middle of the spectrum , and not diagnosed severe as he has recently started to take our hand to what he wants. He has severe anxiety and many sensory issues. I'm so worried for him as he gets older, how "different" he will be. I feel he has a good team of people behind him at the moment, and now has an I.E.P at nursery on action plus. So far he has not made any major progress and I'm finding his behaviour more unpredictable and challenging. He is a very big boy ( size 5-6 clothes with size 11 feet) and I am struggling every time we are out of the house. He has refusal episodes where I can not move him, I'm escorted to my car everyday when leaving nursery as he will not move. I could go on forever. I think as parents we worry for our children , but with a child with a condition I find the worry is so much more. 

    All the best, 

    Kelly x

  • My advice would be to work as much as you can on his speech and other forms of communication you are using with him as, in my experience, this makes things a lot easier. There are a lot of good resources online for this. I found Teach Me To Talk really useful.

    I sympathise with the bus scenario as it's something I've experienced both with my child with asd and my other child (who doesn't have asd). Would your son be able to understand/respond well to a choice of the pushchair or your knee maybe? Or could you put something he likes on your mobile phone to distract him? Or maybe a snack? That's all I can think of though I realise that's probably just one example you're using.

    When he's melting down you could try leaving him until he's calmed a bit if he's safe and not responding to comfort or if you have to move him try to find a way of carrying him where his lashing out won't cause you much damage. I found the 'rolled up carpet' under the arm hold was best for this.

    I'm sure others will be along with some useful tips soon.

    All the best x