Hi all,

Discussion in 'General Parenting' started by skylark, Jun 17, 2008.

  1. skylark

    skylark Guest

    I have posted here before only once and such a long time ago regarding my son Jadm and his behaviours (10 years old severe autism) attending Autism Spectrum Disorders (ASD) school. Im single mother with NT daugher (13) I know the forum isnt specifically autism but have read the messages on here and feel maybe someone i hope could have some insight into the behaviours he has been displaying for a few months now. I dont know what to think as im so confused. Jadm vocalises his wants and need not sentences and emotinons really only basic feelings he will know as a teaching process but not when it occurs to him or anybody else he doesnt understand im thinking maybe a mood disorder ( puberty hormones all over the place), uncontrollable rages that can go on for max 3 hrs without being able to calm or redirect whatsoever, lashing out at me or anyone who tries to calm, kicking, biting, ordering me to sit down to only carry on kicking away. At school he would have the strategies for calming and at home i use scedules for routines and any changes that occur but nothing is working. School know how much his mood has changed. He is now really unapproachable to talk to depending on the mood showing him something even commenting on something, people just saying 'Hi Jadm' can cause an upset with repeating and just putting a worksheet out for him as in school which they do without talking, all of this can cause a major RAGE

    I have appointment with camhs 10 July.

    If anyone can help, i appreciate

    Thanks for reading

  2. Fran

    Fran Former desparate mom

    Hi Donna and welcome back.
    I don't know what camhs means. Could you tell us.
    What medications does he take?
    What's he doing in school? What accommodations are they making for him? I'm assuming he has an IEP.

    Many of us learned to anticipate our difficult child's. I knew if he got too hungry trouble happened. If he didn't get enough sleep trouble happened. If the day was too unstructured and he was left to his own devices he could meltdown because he didn't know what was expected. Too much stimulation or noise really set him into a very hyper young boy. We still had meltdown's but I like to think we headed a few off.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi. I have a son on the spectrum.
  4. ML

    ML Guest

    Just popping in to say "welcome back". I'm glad you came back. You will find tons of support here. Michele
  5. skylark

    skylark Guest

    Thanks for replies! camhs - child and adolescent mental helath. Jadm doesnt take any medications. In school Jadm does have iep has 1-1 if needed as he can do quite alot for himself independently they have tried strategies with him using picture symbols, redirecting, time in the quiet room but nothing for awhile has been working. The behaviour is alot to do with not tolerating being spoken to without having any demands placed on him this is happening school, home around family and everywhere else he goes eg. toy library, afterschool club. Also to do with his own personal space, staff will look over his should when he is doing his work as he doesnt really want anyone sitting by him and will push and elbow, they said even putting a worksheet down without talking will irritate or agitate him this also occurs at home. He does have high anxiety and fears eg. around the house he can just stop dead in his tracks and shout mummy, mummy when i go to him you can see the fear in his face but nothing is their and nothing has changed just have to keep reassuring him its ok and take him from where he is to settle back.
    Even with his sister when she will just say hi or jadm come and do this he starts getting irritated and shouting so i will go to see whats happening and ill ask her what happened she tells me she only asked him to come and see something.

    I really do think he does need some kind of medication to calm him down.

    Im really concerned and worried that he has another disorder on top of his autism.

  6. Marguerite

    Marguerite Active Member

    Hi Donna. Welcome back.

    Your son is ten, there are so many possibilities that could be triggering his raging. It is so difficult especially when they are non-verbal.

    Trying to get into his head somehow can help. Everything he does makes sense - to him. There is a reason for everything. None of it is random.

    How long ago did you notice these behavioural changes? Can you think of anything that changed in his environment at about the same time? A change in teacher perhaps? A different aide? A change in classmate? Enrolling him in a new program?

    I found it a bit hard to fully understand your post due to a combination of your shorthand and lack of full-stops, so please bear with me and correct me if I misunderstand. I gather that the school CAN control his current rages but even though you use the same strategies they do, you cannot? Sometimes kids do behave worse at home because they feel less constrained, and also feel that we (parents) have a direct hot link to the workings of their brain and should KNOW what is bothering them - Autism Spectrum Disorders (ASD) kids especially are like this, even the high-functioning ones. And when we fail to read their minds, they get angry with us because OF COURSE they believe we're being deliberately obstructive and choosing to not understand.

    Some of this could be the beginnings of puberty hormones, but unless he's obviously developing fast in other ways (major growth spurt; rapid puberty changes in sexual development), I would be looking for other causes.

    I wouldn't be thinking mood disorder just yet - it's just too easy to whack on yet another label, when it's far more likely to be pure frustration, especially since from your description he has communication problems. Autism Spectrum Disorders (ASD) kids are capable of some very impressive rages, purely from their own high levels of frustration. A mood disorder label will do nothing to solve the underlying frustration.

    The more I think about this, the more I think something in his environment has changed and he's not coping.

    And please forgive me for bringing this up, but especially in a kid who cannot tell you in any detail of a problem, the likelihood that it could be connected to some form of abuse is much higher. Non-verbal kids are ideal targets - not just for pedophiles, but also for bullies and people who just like to torment others. Also, it could be that someone in his environment is giving him a hard time in some way - people sometimes think they know how to 'help' kids like ours and they interfere, then quickly walk away when it becomes clear that their brilliant idea isn't working.

    A young friend of ours is autistic and non-verbal. He's actually been beginning to use some simple sentences at about age 9, but went through some behaviour deterioration when he was 6. At the time the deterioration was put down as a worsening in his condition. However, his mother was observing him carefully and noticed he was reacting worse in a couple of specific locations near the route between home and school. She found out, by carefully questioning him and asking him to SHOW her what had been happening. It turned out the boy had been molested sexually by the driver who had been assigned to transport the boy to his Special Education placement on a daily basis. Because the boy was non-verbal the police said they couldn't make a case. It also meant the driver was not sacked, but was instead transferred.

    But getting back on topic - it needn't be anything this bad. There can sometimes be a very simple explanation. difficult child 3 had worsening behaviour every school year towards the end of the school year. The reasons were complex:

    * he was getting mentally exhausted by the ongoing effort
    * he was getting hassled by other kids who kept changing the rules on him, because they could get away with it, nobody would believe the weird kid, or fight for his rights
    * teachers were more tired at the end of the school year, and less vigilant
    * new staff member arrived who thought he had all the answers, knew better than parents & doctor and tried to set up his own way of "curing" difficult child 3.

    A combination of all of the above meant we had to deal with a range of problems. However, as each part of the problem was reduced, the behaviour began to improve.

    You may never find out the exact details. But I think there are a few things you can do. Again, forgive me if I mention anything you've already tried.

    1) Talk to the school. Talk to his teachers, his aides, other parents, other kids (if possible). Be laid-back, not too intense (at least to begin with). Ask about any changes to routine, staffing, methods, any changes to who is in the class or who is not. Ask about transport to and from, who does it and who is present also.

    2) While talking to the school, ask when THEY feel any problems began and what THEY think may have been a factor. Try to get a feel for how they react to your son.

    3) Ask the school for advice on how they handle him. Again, just because it is working doesn't mean it's the right method long-term. It could be, but keep an open mind.

    4) Find a psychologist who can work with him to try to find out why he is so upset. SOMETHING is upsetting your son, he is not getting through to people to explain why he is upset and what he wants people to do - maybe a psychologist experienced at working with Autism Spectrum Disorders (ASD) kids can help. A kid with language issues can still get a message across.

    5) Take notes. All the time. Keep a diary on him and write down any issues. Good, bad, interesting - write it all down even if you're sure you will remember. It's amazing what you forget. And often when you go back over old notes, you can find clues as well as see obvious improvement over time that you just don't notice on a day to day basis.

    I know this will sound like I'm blowing my own trumpet, but my three younger kids were involved in a film, "The Black Balloon", which I think would really strike a chord with you. It's a feature film, has won a Crystal Bear at Cannes this year. The story line - a boy, almost 16, growing up with a profoundly autistic brother. The brother goes to a special school while the boy goes to a mainstream high school. The story follows the easy child boy as he deals with having to help look after his brother while trying to cover up his existence to his classmates and also try to develop a relationship with a girl in his class. His mother becomes ill so he has to take on a bigger role in caring for his brother, which brings a lot of stuff out into the open. The film is raw and very real. It's also very positive in the ending as the boy finally accepts that family is family.
    This has helped people understand a lot more about what it is like to live with autism - from a parent's point of view as well as a sibling. There is a fair bit of violence at times especially when either of the boys is in a rage. The ending is very positive, the message is very real.

    The film was written and directed by a woman who grew up with two autistic brothers. She based it on her story. It also stars Toni Collette, Gemma Ward, Rhys Wakefield and Luke Ford (next to be seen in Mummy III as the grown-up son). There is a good chance the film will get to the US in the next few months. If you can get to see it, I hope it can show you that a lot of raging, sometimes seeming extreme, can actually be a part of the Autism Spectrum Disorders (ASD) and not necessarily another disorder on top of it all.

    You've been on this site before so you know we recommend the book, "The Explosive Child" by Ross Greene. It can still work on an Autism Spectrum Disorders (ASD) child, but it's trickier (as is all discipline). Read it, see what you can take form it. If you haven't the energy at the moment to get hold of and read yet another book, then read the thread about the book in "Early Childhood" forum, see if that can help.

    While this forum isn't specifically about autism (it's far broader than that) there are a lot of us here with Autism Spectrum Disorders (ASD) kids. ANd it probably wouldn't hurt to maintain contact with people dealing with a broader base of problems, especially if you're concerned there could be another disorder in there somewhere.

    Let us know how you get on, especially after the appointment.

  7. skylark

    skylark Guest

    Thank you Marguerite for your helplful advice and pointers. I definitely will come back to let you know how i have got on at the psychiatrist. Thanks again.

  8. This is way beyond anything that I have much knowledge of, but the comment about something triggering it hit home a bit. When my son was young, he would be completely happy one minute, but then would fall into screaming rages and tantrums and you could not reach him. When it was absolutely terrible and he could not communicate at all, something major always happened, even if it took me a while to find out.

    I'll keep my thoughts with you.