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.

[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...

[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.

[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.

[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.  

[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...
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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]

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.