Has my son been properly diagnosed?

[Alicia4]

My son, Aidan, is 5 and half years old and preparing to enter Kindergarten in apublic school on the fall. He started having behavioral issues when he was 2 1/2 everything from bouncing off the falls to repetitive behaviors like flipping light switches to figuring out how to break out of the house. When he was 3 and a 1/2 his dad left for a year long deployment to Iraq followed by 6 months of him living in Las Vegas to finish his enlistment and me and my two kids living in LA where we had relocated when he deployed. Just before his dad left his behavior started to worsen and once my husband was gone it went from bad to worse. A couple months after Aidan turned 4 his pediatrician and his preschool teacher suggested he be evaluated by a psychologist. So we took him for regularly for a few months and had him evaluated and we also to took him to a second doc for a second opnion and they both agreed he had ADHD and OCD. We hestitated on putting him on medication, but over the summer while he was being evaluated his behavior turned dangerous. He was only sleeping about 6-7 hours a night so he would wake up before the son got up and he'd go outside and wander around in front of our house, he was constantly repeating himself, you could hardly hold a conversation with him because any time you asked him a question he would be totally engulfed in his own world and it was very difficult to ever get an answer, he was hoarding food under his bed and eating boxes of cookies and fruit snacks in single sittings, he was hyper and couldnt focus on anything, even getting dressed, I would have to say something a dozen times before he actually did it and even then he wouldn't always complete the task and while it was hard at home, my biggest concern was school. He wasn't able to complete anything he started, he didnt have any friends and he almost always played by himself. He wouldnt participate during chapel time or circle time, he was always off in the clouds at home and at school. He had this awful fear of the cat and if he had to walk past the cat while he was close, Aidan would fall on the ground and start crying and panicing. This is just a sample of some of the things he was doing, and so they started him on 20 mg of Prozac and his fears, anxiety, and repetitive behaviors seemed to get better, but he was still out in the clouds  and when it came to the cat he went the opposite direction. Aidan became obsessed with the cat and actually took a screw driver and disassembled the two way dead bolt locks we put on the doors to keep him in the house all so he could pet the cat. So they put him 18mg of Concerta, and he seemed to be slightly less in the clouds and it was a little easier to hold a conversation with him. Then they put him on 27mg of Concerta and he got really grumpy and agressive, so they dropped him back to 18 and over the past 7 months have gradually brought him to 18mg of concerta and 60 of the Prozac. In February his father returned home for good and we hoped his behvaior would improve a great deal and it seemed to only get better as they gave him more prozac. In June, he was doing ok, except he was still in the clouds half of the time and still very impulsive, he would get upset easily but them would be quick to apologize. So in the beginning of July they kept him at 60mg of Prozac and moved him back up to 27mg of Concerta and he has gotten really aggressive and he's angry all the time, you can hardly be around him because he is so grumpy. If you ask him to do something more then once because he isnt responding to you the first time, he gets mad and repeats I hear you mom a dozen times. It's as though he is hearing me, but his brain isnt telling his mouth to reply and say ok mom and his brain isnt telling his body to move and do what mom said. He is frustrated with one thing or another all the time. At school he is fighting with everyone and his teacher said his ability to focus is worse then it's ever been before. Which brings me to my question, his teacher (who has a grown son with ADHD and OCD and 20 years experience working with pre-schoolers) disagrees with his diagnosis. She is concerned that he has a mild form of autism, which is why he is having a negative response to the Concerta and is so socially awkward. I have told his doctor what Aidan's teacher thinks and he disagrees. His doctor has just given me the ok to put him back on 18mg of Concerta since the 27mg has just made things worse for the last 10 days. My concern is that we have spent a year plus getting him diagnosed and trying different dosages of medications and I have a great deal of respect for his teacher and his doctor, at what point will the diagnosis become more clear? And also does my son sound like he has a mild form of Autism or is his teacher way off? Do you have any suggestions for his treatment and what our next move should be? I would greatly appreciate any feedback or suggestions.

[margypops]

It is well known the effects of Prozac on adults even.aggression etc, he seems to be being given big amounts and other drugs ,I would seek another opinion entirely and go to the Search engine and put in side Effects from Prozacand other powerful drugs .Was  it not possible this little Boy was simply acting out because he miss ed his Dad and heard scary stories about the War,also had a sibling come along that he could have been jealous over, you dont say if he has a younger Brother or sister,Sometimes when children get to pre schoool  if their childs behavior is differant they are told to get a diagnosis,and now pre school teachers are saying take him for evaluation,You would do well by your Boy and I know you mean well its a scary thing to be told and this is happening more and More,if you got into the internet found out more details of these mind altering drugs and got another check up for him as to whether this was just normal 5 yea rold behavior.Forgive me if this is straight and scary I dont know how else to say it.

[Sally44]

As the summer holidays are here.  And as there are alot of side effects of the medications you are giving your child. Is it at all possible to for you to gradually reduce his drugs and see what his behaviours are like with out the medication for some time.  I think you need a clearer picture of what his difficulties are as opposed to possible side effects of medication he is on.  
I have posted on the autsim forum page the diagnositic criteria for autism and aspergers on the Health Page.  You can access the Health Page by clicking on the Health Page icon on the top right hand corner of the page.  Parents have posted examples of their child's behaviour which met the diagnositic criteria.  That should give you some examples of what the professionals are looking for when they observe your son.
It is also quite possible to have traits of more than one disorder.
In the UK we do not medicate our children to the level that happens in the USA, but I suppose we will ge there eventually.  But I am not sure that is a good thing!
If your child needs to be medicated to such a level to function in school, then I think you should be considering removing medication and looking for a school that can deal with the difficulties he has without medication.  There is no information about what these medications could be doing long term.  I am not totally against medication.  But I am against medicating a child so that it makes the life of mainstream teachers easier.
If your son needs a different education environment get it.  If he then need some medication on top of that okay.
Have a look at the DSM IV diagnostic criteria for ADHD and any other condition they mention in relation to your child.
I would also recommend getting in touch with the National Autistic Society in your country and the Educational Advisors they have to make sure your child is getting the support he needs.
I would also advise getting in touch with a parent support group so that you can meet other families in the same postion as yourslef, and so that your child can socialise with other children.
If you are not happy with any diagnosis you can ask for a second opinion.  If you have the money you can also get an independent report from an Educational Pscyhologist.

[Alicia4]

Aidan wasn't agressive on the prozac, he didnt become aggressive until they started him on the higher dose of Concerta and I know that stimulants can make children with any form of Autism agreessive and angry...which was a huge red flag for me. Aidan does have a younger sister, she was born 2 months before his dad left for Iraq. I wish I could say it was his dad's deployment that made his behavior so bad, but the truth is, he had been having behavioral issues for a year and a half before his dad deployed. I have a huge family and everyone in my family is blessed to never had a child with any type of behavioral disorders, and from the time he was 2 and we would fly home from our current duty station to visit with my family, so many people approached us about his strange behaviors and being worried that there was something not quite right. As a first time parent, you have nothing to compare your child to, as far as your concerned they're perfect in every way. But it was like someone flipped a switch on him when he was two. I am certain there is something wrong, I just want to know the right diagnosis so I can properly educate myself and do what's best for my son. Its hard when I am getting conflicting opinions from his doctor and his teacher because I value their opinions. As far as the medications he's on, well lets just say I am not thrilled about having him on anything, but his behavior had gotten so dangerous that he was trying to fly out of windows, he was breaking out of the house and walking around the neighborhood at 4am while everyone was sleeping, he was only sleeping about 6 hours a night at 4years old, I had to carry him everywhere because as soon as I put him down he would wander off, etc, etc....I thought it was my parenting and when I moved home, my family commended my patience and parenting abilities and his doctors and teachers say I do everything right. I just got to the point where I was terrified he was going to get himslef killed or kidnapped and there was nothing more I could do, I was at home with my kids and spent my days watching him like a hawk and I would turn my back for 5 minutes and he would get himself in these crazy situtations, so I did what I had to do to keep him safe and now I want to be sure he has been properly diagnosed so that I can do what's best for him.

[chevygirl97]

Take him to another doctor to get a new diagnosis. Preferably a child psychiatrist or  developmental pediatrician

[MJIthewriter]

Along with what other people said, could there be emotional issues with having his father away?  Perhaps he's trying to cope with the stress by sinking into his own world.  When I was really depressed I used games as an escape. I had to break away from them eventually.

Medications have their place, but I find it disturbing when they are used to try to numb out certain feelings and change the way someone thinks. I don't believe meds are very effective used that way. They can be used to take the edge of some things. I'm on welbutrin for my depression/anxiety problem. So far I haven't had the violent upsets I had when I first moved two years ago. To be honest though, I think the medication was only 10-15%, the rest of the progress is behavioral and my own drive to better myself and my behaviors. That will go further than any med treatment.

I'm learning to spot my triggers and cut them off at the pass.
If I can recognize when I start to feel angry, I can work on ways to diffuse the anger, or leave the situation. There are some emotions I can't control well, but if I let go and just let myself cry it out and during that time try to find something to occupy myself, it goes away eventually, and I feel better.

I still live in my own world, but to be honest I would not want to have that removed from me. If you want to see a glimpse into the intense world inside my head, feel free to pm me. I can show you a link to my artwork and writing. (the ant creature in my avatar is one of my characters. I painted him watercolor.)

Perhaps if there's a way, see if you can incourage your son to write or draw out his feelings and what is occupying his mind.  I grew up with different imaginary characters and stories.  Paper and crayons were readily available and I enjoyed drawing out my creatures.

[Sally44]

Have you had a look at the diagnostic criteria for autism yet that is posted on the Health Page?  Have a look at it and post back with your thoughts as to whether it is relevant or not.

[MJIthewriter]

I think either way, autistic or not, having the father away will cause emotional upset. That can manifest itself in many ways. One thing with autism, is the tendency to not always share emotions. Heck, just understanding emotion can be difficult, especially in the younger years. I know with me as a kid I seemed to believe I had to cope with them by myself and that people could just stop feeling.... It doesn't work that way.

Not only that but emotions tend to snowball when not coped with... A minor thing that didn't get addressed may stay in my mind. Something else happens, then I feel worse...and it eventually builds up to a point that it explodes. I don't believe this is specific to autism, but because autism presents a communication berrier, this happens a lot easier, expecially for those who are nonverbal.

I don't remember really talking about my emotions to my parents under age 11. Maybe I did, but I can't pull up a specific memory. If I did, perhaps one of my parents can remind me... I know my mom lurks my posts here. I did complain if someone bullied me.  That I did, but as far as saying I'm upset, I don't know... There was a time my dad had to work several hours from where we lived. He was gone for the week and visited on weekends.  I don't remember a whole lot if I behaved worse when he was gone or not. I know I was really happy to see him on the weekends. I'd wander around the bus stop, catching bugs, and otherwise looking like I wasn't paying attention to the world. But once I saw the bus come and my dad come out, I ran right up to him to give a big hug.

[Alicia4]

I clicked on the heath page, then Autism, and then I clicked on the medical definition of Autism. I believe that is where you were directing me, if not please let me know if there is somewhere else you wanted me to click. Forgive me I am not too familiar with forums. I read the criteria and there are only certain criteria he meets. He is overly sensitive to sight, things that sound average to me are often too loud to him and he'll cover his ears or look for the quickest exit. Although if it's something he's interested in like a movie or his Leapster game, a little loud is ok. He doesnt adapt to change that well, he gets frustrated and upset if you change certain things. He is extremely socially awkward, it's as though he doesn't quite know how to behave around other children. If he wants their attention, he might shout at them instead of speak in a normal tone, because he wants to say something, but isn't sure how to go about get their attention. He has 2 friends and they are both girls. Also the majority of the time he plays alone, at home and at school. He is difficult to connect with and hold a conversation with, although he is very loving and empathetic, not at all aggressive. He can be very affectionate, but mostly just with me (mom) and somewhat affectionate with his dad, sister, cousin, gramma, and auntie. Once you do connect with him, it's difficult to keep him engaged for an extended period of time (more then 10 minutes or so) unless you are helping him put together a puzzle. When you do play with him, it's by his rules, and if you go off the beating path he will lose interest in playing with you and actually ask you to go away. He speaks well and the only real delays he seems to have are that he isnt able to do much on his own, you sort of have to hover and remind him a dozen times to get him to complete a minor task, like getting dressed, putting his clothes in the dirty laundry, etc. Most of the time he cant handle more then one task at a time and if you ask him to do it and you walk away count on it not being done when you return. He is capable of alot you just have to stay with him, be patient and give him direction and keep him focused otherwise he becomes overwhelmed and gives up or melts down. He is very jumpy and easily frightened. He repeats things over and over dozens of times, like a scene from a movie, or a phrase from one of his Leapster games. It's like he's a broken record saying the same thing over and over. He refers to play by himself, and if I let him, he would do nothing but watch movies and play his leapster. He always wants to know where we are going and what we are doing and how soon will we be going home, because home is where he wants to be. He gets overwhelmed at family functions and we have sort of accepted that it is just too much going on and when there is a birthday party, once he says hello to most of the family we let me retreat to wherever he wants to play. Before he started medication he had lots of rituals, especially at bed time and he would completely loose it if you tried to change anything. He's better now that he has been on prozac and also his fears have improved, he use to be terrified of the cat and now he is obcessed with the cat and wants to be with him all the time (Just a note: all of these behvaiors were full force up until they started him on medication almost a year ago and alot of them have gotten better, some more then others.) He does get stuck on tasks all the time, he's hyper and has a short attention span, even on medication. Although he isn't nearly as impulsive as he use to be, which has made it possible to keep him safe. He does have narrow interests, which include puzzles (dozens and difficult ones beyond his age range), movies, Leapstar, and action figures. He will play with other things some of the time, but he would rather watch movies and play his Leapster and it's when I make him take a break from either of those things then he plays with his puzzles and action figures. So theres Aidan up against the criteria....there are certain criteria he seems to meet, but then other criteria, like difficulty with imaginative play, rubbing or licking things, flapping hands, lack of eye contact, speech developement, and so on....he has no problems with. So I guess what I am wondering is how much of this criteria has to be meet in order to consider a child as having Autism?

[Alicia4]

My son is always in his own world and I treasure the moments he allows me in, or comes out for a bit to visit.The difficulty is finding a way to educate him and socialize him without taking his world away from him...because I don't want to do that, he is a happy child and that's important to me, but it's also important to me that he learns to socialize and make friends and get an education, all of which he is struggling so much with. If you don't mind me asking what difficulties have you encountered socially and academically and how have you dealt with them? As far as art goes my son had no interest in crayons til he was almost 4 and still takes little interest in being creative. My husband is a wonderful artist, so I thought maybe he would be more inclined to draw, but he would rather watch movies or play his Leapster or put together his puzzles. My daughter is just now 2 and she loves to draw, so I encourage both of them and who knows he might come around. I think it requires him to be still and that's why he doesnt do it, he doesnt have the attention span. He doesnt sit still to play his Leapster or watch his movies. The only thing he ever sits still to do is put together his puzzles, he is incredibly focused when it comes to his puzzles.

[Alicia4]

Can you tell me what exaclty is the difference between a Child psychologist, child psychiatrist, and developemental pediatrician? I am unclear as to who is the most qualified to observe and diagnose behavioral disorders.

[Alicia4]

I re-read your first post and forgot to mention that my husband and I have discussed taking him off all medication and re-evaluating Aidan ourselves along with professionals, to determine what the biggest behavioral issues are, get him diagnosed again, and re-assess what our goals need to be in terms of treatment....but I hestitate because Aidan was in a very scary place a year ago, I couldn't keep him safe. I had every sharp object hidden in the house, I couldn't leave him alone with his sister, he was breaking out of the house in the early morning hours, even after we put two way dead bolt locks on the doors. The biggest issue a year ago was that he was incredibly smart, but had zero impulse control, which made it impossible to kee him safe and i fear that if we take him off the prozac that something is going to happen to him.

[Sally44]

I will comment on the things you mentioned in your post to me that I recognise as being similar to how my son is, who is 7.5 years old with a diagnosis of an autistic spectrum disorder.  He also has some impulsive behaviour, but has been given a dual diagnosis.
Firstly you have to understand that it is quite possible for children to have a mixture of diagnosis in the same way that you can have many types of fruit salad eg. banana, strawberry, peaches etc or you can have a mixed fruit salad.  So you may be dealing with two things.
My son also has alot of sensory issues, infact that was some of the main behaviours I saw.  Google the name Olga Bogdashina and read an article by her in Autism Today.  If that sounds relevant to your situation then her book Sensory and Perceptual Differences in Autism and Aspergers might be useful to you.  It also has a caregivers questionnaire at the back that you can complete to get a sensory profile of how your child is affected.  Olga is a reputable professional who has been invited to our city on a number of occasions to give seminars to both professionals and parents and her questionnaire is used by our autism department.  Olga also has a daughter with Aspergers and a son with Autism.
Another thing I recognise is your talking about his attention and focus and that he has lots of it for things he is interested in and very little for engaging in what you, or others, want him to be interested in.  That is typical of and ASD (autistic spectrum disorder).  It also fulfills the criteria that says 'restricted/limited areas of interest'.  
What I would suggest is engaging him in what he is interested in and trying to 'teach' things through his interests, simply because if you don't then he just will either tell you to go away, or get up and walk out the room.  My son is the same.  He easily loses interest or has none at all for what I consider is important or what he should be doing.  If someone comes over to play with him he will lose interest and tell the child to go and play with his sister or with me.  If I get them both doing something he is interested in then he stays engaged.  But his play can be re-enactments of things he has seen on DVD or TV and he sticks to the 'script' and cannot deviate from the storyline, which causes both him to get frustrated (because the other child doesn't know what he should be saying or doing), or my son gets frustrated because the child is trying to introduce a imaginative storyline and my son just wants to renact something.  This meets the criteria for problems with social interaction, not being able to have peer relationships, rigid behaviours/routines and lack of imagination. (although I must emphasis that my son does have imagination in his areas of interest).
You say your son doesn't know how to get other childrens' attention, so he might shout at them and finds it difficult to hold a conversation.  This again is how my son is.  But my son doesn't know how to initiate contact or a conversation.  For example he might go up to a child and say 'my scooter has got two wheels'.  We would expect him to ask their names or tell them his name, or ask them if they want to play, or ask if he can join in etc.  But these are social rules that other children pick up, but children on the spectrum do not learn these things automatically, they have to be taught them.  It also demonstrates a difficulty in understanding other people (called Theory of Mind - you can google that too).
Your son might also have language processing problems and semantic pragmatic disorders around speech, which will make communication difficult for him.  You can see examples of this at http://www.hyperlexia.org/sp1. html (take out the spaces).

[Sally44]

My post was so long, I had to do it in two parts!
You also mention your son repeating things he has heard.  This sounds like echolalia, which my son also has and this too is part of an ASD and also indicates language processing problems.  Google 'echolalia and autism' and it should give you some good examples.  My son can talk his own speech, but he also uses alot of phrases he has heard from TV or DVDs, and if he hears something he likes he will repeat it a number of times to himself.  He will also 'replay DVDs in his head' and will repeat the dialogue quietly to himself whilst he is doing that.  If I ask him 'what are you watching' he will give me the name of the movie.  He also has a brilliant memory for things he has seen or heard on TV.
My son is also brilliant at constructions toys such as lego and puzzles.  Again children with an ASD tend to be good at visual/spatial abilities and poor on language and social communication.  My son scored on a percentile of 93 for visual/spatial skills and pattern recognition and only 2 for understanding verbal instructiions.  (which may explain the fact that you have to keep repeating instructions to him).
He may also have Executive Function Disorder.  These are skills such as planning, sequencing, organising, prioritising, initiating, inhibiting.  It is also typical of children with these types of problems to not have any understanding of time.  So anything involving words about time as in 'do this today, tomorrow, in 5 minutes, when you have finished etc' mean nothing to them because they have no concept of time.  If you have problems with executive functions you will find it hard to follow verbal instructions that involve planning, sequencing ie. do this and then do that.  You can google Executive Function Disorder to see what that is, but it usually accommpanies an ASD.
This could explain his difficulty when you ask him to do a number of tasks.  He cannot sequence them or plan them or organise them.  But he might also have problems with visual/verbal or auditory memory or processing.  
For visual perceptual problems you can google Irlen Syndrome and have your son assessed to see if that would help relieve any visual sensory overload.  That might also help him with concentration and help him to stay engaged for longer.
If he has problems with noises and appears to not like them, but later on appears as if deaf.  That means he has effectively 'turned off his ears' to stop sensory overload.  You could try getting a pair of ear defenders, the type you get from a DIY store that are to protect your ears if you work in loud environments.  My son has a pair of these for just over a year now.  He uses them when he needs it and takes them off when he's okay.  He seems to be getting better at tolerating noises, but I found that the ear defenders helped him cope in 'out of home' environments eg. socialising in family groups, going to the cinema etc.
My son also would prefer to always be at home and is always anxious about going out and wants to know where we are going and when we are coming back.  
When you have to go out you could try giving him a clipboard with pictures on of the places you have to go to and he can tick each one as you do it.  It will help him see that he is moving down the list and it is also a visual way of him understanding the passage of time.  Because if you don't understand time, then leaving the house is scary because you have no understanding of 'when' you will return.  You will also need to make sure you keep to the sequence of the pictures you have given him because if you change the sequence eg. go to the petrol station before the supermarket and the picture list has them the other way round, then you can expect a tantrum because you have changed the 'expected routine'.
I think your son meets more of the criteria than you think.  Sometimes it is difficult to match the behaviour with the criteria, but you have mentioned alot of it.
Although you say he has imaginative play, is that always in all circumstances, or only in some areas?  If he does indeed have alot of imaginative play then he might be more Aspergers, which is still on the autistic spectrum.
Although you say he doesn't rub or lick things, you have mentioned plenty of other sensory behaviour and no-one child will show all of the symptoms, just enough of them to get the diagnosis.
My son rarely flaps, and he sometimes spins.  But you have mentioned rigid routines he needed around bedtime.  Sometimes these rigid routines and behaviours can be interpreted as OCD when they are not, they are part of the ASD.
You say he has normal speech development yet he has problems communicating with peers and might shout at them in an attempt to play with them.  He also repeats TV dialogue and phrases from his leapster.  These are speech problems.
Out of the list of the critieria it usually says things like 'the child must exhibit 2 out of the following 6 items'.  If it does appear that he doesn't have enough of the criteria for a diagnosis, he might get a diagnosis like PDD NOS, which basically means still on the spectrum, but not enough of it to get one of the other diagnosises.
Sorry this is such a long post!  Post back if you want more clarification.

[MJIthewriter]

That lacking imagination and imaginative play is sort of a joke in the autism communities. Try lurking forums like wrongplanet.net and you'll see several remarks and topics where the people break apart the DSM definition of autism. As it turns out, it's true for some people, but not all. Some people lack imagination and some don't. (Both autistic and not). I think with autism, a lot more of the imagining goes on in the head and less externally.

A non autistic child likely engages you in their fantasies a lot more than an autistic one.  If an autistic child lets you in their games, chances are you'll have a set of rules to play by to keep it fun for them.  It was sort of like that playing with me.  Yeah if asked to, I'd play things like tag and I'd follow along. But if not asked, then I played by myself. Sometimes I had a friend or two to follow me. I preferred being one on one with people (and still do) than being in a large group/crowd.

Socially as a kid, I could take or leave people. There were times I got lonely and wanted people with me, but most of the time I was pretty self sufficient. I enjoyed activities if people actually asked me and let me in as well as let me know clearly what I am doing.  If I'm left confused, then I go off and abandon the group to find something I know how to do.  If they wanted to play along with me, then I let them. One high point in my childhood was when I started making some kind of building out of boxes, carpet scraps, and misc things. It started out with just me and a little 4 year old and just one box. She moved away so I was left by myself to start expanding the box. A neighborhood boy was interested, so I told him what I was doing and gave him some orders. "See that dumpster there. You go in and pull out a big piece of carpet for the fort I'm making. I'll go and find some boxes."

Then another boy came along. I let him know what I was doing. Next thing I knew there were about 3/4 boys playing along with me creating this monster of a building out of boxes.  We cut ends open, so that we can crawl through the structure, nap, or talk.  It was fun until the structure got too big and had to be thrown out...
------------
As an adult, I'm pretty content just staying home on my computer as long as life would let me. I have to _force_ myself to do things. Often I feel an aversion to going out, but eventually I have to pick a day and stick by it for shopping, getting things. Talking to people, etc.  Usually it helps if I have someone else with me to print off and remind me of such and such event occurring outside. Chances are if pressured enough, and shown the way, have someone with me, I find myself enjoying the times out.  But having that person with me makes a big difference. Left up to my own devices, I'm pretty unmotivated. It isn't that I don't have goals or things I like to do, just connecting the dots to get the ball rolling is where it breaks down.

Given the choice to face the unknown or do something familiar, I rather do the familiar. Getting around that feeling takes a degree of force. Sometimes external force.  It also takes willingness on my behalf.  A lot of times I just don't feel like it...

That's something I need to work on. I believe my mom struggles with the same feeling and that may be why she and my dad have disagreements.  My dad likes to go out and do things like watch movies, come over and visit me, etc. Mom, if she's like me, doesn't feel like going, in fact may groan at the thought of having to stop whatever she is doing at the time, but if pushed far enough and made to go, likely finds the experience enjoyable. That is if she will let herself be forced out of whatever she is engaged with.

If I can overcome it with myself, then I can likely do a lot more and give a lot better advice. I believe this is my biggest problem. I don't know if it is autism, depression, OCD or ADHD or just a HUMAN thing... Maybe none of the above (except the human part) or all of the above? Or it could be any combo... Who knows? If I can understand what causes people to feel lack of motivation and block them from doing x- and find a solution, I'd probably win the Nobel Prize, lol. I can imagine the countless wives being thankful to get their husband off their bum and do the list of house chores that need done.

[Sally44]

Obviously, if he is a danger to himself or others off medication, then that is not really an option, unless he is in an environment that can cater for that.
(I just read through your first post again about flicking light switches, my son also did/does that.  It is sensory based and indicates a visual perception problem).
What type of school is your son at?
It might be useful to you to get in touch with an advocacy service that can tell you what are your son's and your legal rights regarding education provision.  If your son is at least average intelligence with the types of problems you describe, which could be down to a number of diagnosises (some on the spectrum with possible ADHD), then you may be able to get him into a private school funded by the state because the state education system will not be able to cater for his intelligence and his needs.  Therefore he will either be in a mainstream school and not be able to learn at all.  Or put in a school for children with low IQ or behavioural problems which cannot meet his intellectual level.  That is the position that I am in, and many other parents find themselves in the same situation.
But you are right to question what is causing your son's behaviours, but you also need to get an idea of his intellectual ability and that needs to be assessed taking into account the fact that he may have verbal/communication problems and therefore should not be assessed in a way that relies of these abilities to demonstrate intelligence.
You might also find it useful to get some advice from a nuticianist about his diet.  Try to find one that has experience of children with ASDs and ADHD.  For example fish oils can help concentration.  Also removing sugar (incase of yeast problems) and using probiotics.  Keep a food diary for a few weeks to see what he is asking to eat and how his overall dietry intake looks.  Then just try to give a very health balanced diet.  If you wanted to try gluten free or casein free diet you could do that sometime in the future to see if you notice any improvements.  

[Sally44]

I've just managed to teach my son how to play Lurkey-one-two-three.  This is like Hide and Seek, but all the Hiders have to try to get back to a winning post before the seeker spots them and gets to the winning post before them.  It has taken some time to teach him, but he likes to hide.  But he wouldn't hide on his own he needed to hide with someone else.  Then he had to be taught that when hiding he also had to try to be aware of where the Seeker was so that he knew when it was a good time to run for the winning post.  But tonight he hid on his own and he beat me three times back to the winning post, so I am happy that he has learnt how to play.  The thing is though, that if I hadn't asked him if he wanted to play and learn the game then he wouldn't have asked to join in with us and most likely would have appeared unaware of what we were doing.  So I'm happy that i've taught him something that he obviously likes to play and one that he can play with other kids.

[MJIthewriter]

Sounds quite similar to me and my story. I'd have fun once I could understand the rules and what was expected. If I wanted to play that game again, after being shown how to do it, then I can activly participate.  But still I tend to be rather solitary. It may be part my nature more than autism. That's great you got your son to enjoy that game!  I think I've played it a few times with family and friends. Or sometimes I just liked to hide just for the sake of hiding...  When I was younger, one of my favorite spots was in the laundry area, hidden in the pile of clothes. Another area I would love to hide was an unfinished sort of a crawl space (without being closed off) in the laundry area of the house. My mom tried to explain that area was "too dirty" and make it off limits... I didn't really hide there too much.  Age 11-12 in our other house, I liked to hide right next to the downstairs freezer. For some reason, if I was quiet enough, my parents had trouble finding me there.

As a child (up to age 6-7?)I used to flick light switches on off and see how fast I could do it. To me it was a game...one that almost always ended immediatly after a few flicks... It annoyed my parents and they'd pull me away from the switch or scold me.  II still don't know why I thought it was so funny...  I'd laugh as I did it and if my parents got angry, I'd laugh even more... For some reason their frustration made it all the more funny, even though I wasn't planning on being defiant... I just liked the reaction. ON OFF ONOFFONOFFONOFF "Stop it!" "You're gonna break that light switch!"  It seemed rather predictable... I don't recall doing it much when by myself. I think I did a few times, but usually it was done in relativly close proximity to where my parents were... I guess it could have been a subconsious attempt to get attention? That I don't know... I'd be more inclined to do it when hyper than when calm.

I guess that's what I was like when I got into OMG hyper mode... I guess the light switch was a form of "stimming", one that I wasn't allowed to do, and eventually lost interest bothering.  I also liked at the time th eidea of going different places (2 outlits at opposite ends of the room) and see how that would turn on/off the same light... Once again I think that was a relativly short lived aqctivity that lost its appeal after awhile.

[MJIthewriter]

When your son is hyper, is he giggly, laughing, as my dad puts it "Slap Happy?) when he is doing some of his misbehaviors?

It could be the cause/effect reaction he's looking for.  I think some cases it's the predictable reaction that autistic people (and others) are looking for. One of our family friends has a nonverbal autistic child.  When he was younger, he used to love slapping my dad on his belly. Every time he slapped my dad's belly, he said "Ow!" It was the "Ow!" he enjoyed. (not the act of hitting, I'm sure.)

Same with me when I was around age 6. Dad and I read a Bernstein Bears book Hop On Pop. I got the idea "hopping on pop, must be fun. I hopped on his belly. He retaliated by saying "Ow!"  Once again predictable cause/effect...

I think a good way to break the cause effect, is to bring an "effect" that is less desirable... One that he won't like. (but not something like physical contact...that may bring a different reaction).  Like the light switch, if I did it too much, I was kept away from the switch. If I got too hyper, I was forced to sit in time out... Usually I'd calm down even though I hated being there. I know that "Supernanny" says one minute per year for the child, but for an autistic one like me, it seemed to be I was in forever. Maybe I was put in longer and it likely helped.

Now if your son is not "Slap happy" or appearing happy at all when he is aggressive or misbehaving, there's another reason. He's not doing it for fun.  He's likely frustrated or angry at something. Likely built up emotions or as a reaction to something he didn't like. For instance if it's a sensory thing, he may get angry if being grabbed or touched. If a light is flickering and he turns it off without laughing, chances are he does not like that light. If it is flickering, I don't blame him. That light needs to be changed.

I hope this helps in some way.  Likely it's one of those ABA things. I don't know...

[Alicia4]

When my son gets hyper, he is totally in the clouds and some of the time he does appear as if he is slap happy. The hyper part isn't what frustrates me, (although I can get tired just watcing him) it's that I can't get his attention for any length of time. If he is bouncing of the walls and I am trying to get him to focus and get in PJ's for bed, at times I literally have to hold on to him, get on my knees and repeat several times to him that he needs to look me in the eyes. Then once I repeat that a few times, I can give him direction and some of the time he will follow the directions, but most of the time he will get his shirt and pants off and then like a mosqito to light something will grab his attention and then I quickly get him back on course he might get into his pull-up and then he gets distracted by something else and I might have to re-direct him once or twice more. We started a chart with 6 things he is responsible for everyday: getting dressed, throwing away his pull-up, putting his dirty clothes in the laundry, putting his dishes in the sink, cleaning up his toys, and doing his homework. It doesn't sound like much responsibility for a child almost 6, put if he could do most of those things without being told more then twice or even without being told at all, I would be thrilled. Anyhow, he gets a star for everytime he completes a task, today for intstance he got 2 stars for getting dressed because I didn't have to dress him this morning or tonight, although I had to stand by and keep him on task and it took him 15 minutes, I didn't have to physically get him dressed, he was able to finish on his own. Then at the end of the week if he has a few stars on everyday he gets a present (a new batman puzzle). Then we will build up from there, adding on new tasks and hopefully he will get better at them the longer he does them.
Aidan does get put on time outs although up until he was put on medication they were completely inaffective. He would sit on the steps and I would speak to him in a calm firm voice after his 4 or 5 minutes and explain to him what he did wrong, and a good chunk of the time it was very difficult to get him to pay attention to what I was saying and even when he did pay attention and was remorseful and apologized, he would go straight back to what he was doing and then he'd end up back on the stairs and we'd go back and forth until I came up with an alternative solution. Since he has been on medication, the time outs have become a little more effective, although I don't use them as often as I use to. He is obcessed with his movies, his Leapster and his cousins gameboy now too and it seems the threat that he might loose any of those things is at least some of the time enough to get him to straighten up. I will say when he is agressive, he is flat out angry and when he gets angry it becomes very difficult to reason with him. I put him on a timeout when he gets that mad because 5 minutes by himself is about the only thing that difuses the situation enough so that I can talk to him and he here's me.

[Alicia4]

I am going to google all the info you gave me and then I will make another post. I am so greatful for all your feedback....for everyones feedback, I am on a mission to gain as much knowledge before my sons next appointment on Monday and I half the battle has just been knowing where to start and everyones suggestions and feedback have been extremely helpful.  

[Sally44]

It is a good idea you using the chart with stars to get rewards he likes.  It may take a while for him to understand what the process is of getting stars and the consequences etc.
I just wanted to post that alot of the stuff you mention I am still working on with my son who is 7.5 years old.  On schooldays I still have to dress him in the morning because he just can't get his act together to dress himself.  But I leave him to do it himself on weekends and in the evening.  I would say try to see if he can do these things, but if he is repeatedly showing that he is not able to do it try not to stress out too much about it.  There have been a number of times when I have had to 'lower the bar' regarding my expectations of what my son can do.  And the frustrating thing is that he is capable of way above some of his peers in other abilities.  But everyone keeps telling me that is how it is.  There are adults who can give seminars and speechs about autism, but they cannot make their own beds because of the planning it involves.  Sounds bizarre, but it's true.

[MJIthewriter]

I don't know if this will help your children, but with me there came a point my parents just flat out refused to dress me... I vaguly recall throwing a terrible tantrum that I couldn't do something... (I don't remember what age exactly...)They stood firm and wouldn't do it for me...  If they just caved in once, I had a "saftey net" that I could just rely on if I needed it... which knowing me and my obsessions, that would be just about every time...

As harsh as it sounds and as much as I hated it back then, it was good of my parents to stand firm by their decision. The same thing up to age 12 I let my mom pick out my outfits... At some point I got sick of the styles she picked out and we had a verbal arguement. The result: she gave up picking clothes out for me. I had a fuss, but I'm glad now I know I can rely on my own judgement to wear... I've had to learn somewhat the hard way, but I'm glad.

Sometimes a lot of learning is just that... if the child is capeable of dressing themselves, then it's time to make them responsible for that.

[MJIthewriter]

...and when I say I pitched a terrible fit...you can expect the stereotypical classic all out screaming, ear shrieking, bawling, kicking meltdown... Though I don't remember dropping to the floor at age 12 on that particular dispute, but I think I threw a pretty whiney one...certainly way immature for my chronological age...

It was a ploy to get my parent's attention...and hope for them to give in... I guess they saw it for what it was...
------------------
I don't know if any parents of autistic children saw that one coming...lol. Yeah it does further complicate the picture of autism...

You got the sensory meltdowns which are a reaction to an unpleasant stimulus
And then you have your all out classic bratty child meltdowns but with added vigor...

The louder and the more heart-breaking the better, as long as it works... I have to admit some of my self abusive meltdowns fell into that category, because hey if nothing else will get the other person to respond maybe _that_ will. And it usually does! And if it doesn't then it just escalated...

In this case what I wish when it is an argument that triggered it is for the person to back down and shut up... But if they don't then I have to put my pride aside and leave the scene to cool off...  Sometimes I still get tempted to throw a fit…it’s a bit of an impulse as a reaction to frustration… Once again it takes maturity to spot that coming and do what I can to stop it before it erupts. For instance I was panicked about not finding something before leaving work. I may feel frustrated that my grandma is not helping… No I didn’t feel tempted to lash out, but other times in the past I would feel tempted or lash out against my sister or anyone else in the area, as if I thought they should all stop what they were doing to help me find x…

I was a bit frantic, but I did find what I was looking for. I felt like I was going to be late, but I realized I’ll make it on time… I just about always make it there about 5 minutes early…  That helped calm me a little…and I made it to work and checked in 5 minutes early like usual.  A lot of the anxiety that triggers meltdowns is blown way out of proportion...  I have to cognitively realize that even if I may not be able to line my emotions with what I realize. (That seems to be a weakness with autism, is being able to control how I feel at a given time…) At least I can control my actions... At times it’s hard and may be very hard to control them, but it is possible. If all else seems to be failing sometimes praying helps.

A worker in 1st grade always asked me whenever he saw me in the hallway at time out, "Who's responsible for your behavior?? He wouldn't let me go or leave unless I replied "I am. I am responsible for my own behavior."  As a kid I felt it was unfair and thought that I had no control over my own impulses...I resented that worker....  But he is right.  I may not have liked that back then, but as an adult I know I am responsible for my own behavior, even if I may not want to believe it every time...

[MJIthewriter]

To even make it more frustrating, these feelings behind those meltdowns are genuine...

They aren't doing it out of spite.  I pitched an all out screeming fit when my parents made me take a bath all by myself... I honestly didn't think I could do it without help... I screemed and screemed. I felt like ly parents were being cruel...  But when I came to terms, exhausted myself, I turned on the water and started the bath. Nopt only did I do the bath, but I proved to myself I am capeable of doing so and that I didn't need my parents help. As an added advantage, I could fill the tub with about as much water as I wanted. (I made sure it never got to overflowing).