Help?!?

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I'm new to the community so please forgive me if I am approaching this wrong. But I'm desperate for resources, information - heck, even a listening ear at this point! Here is my situation...

I have a wonderful 7 year old boy. He's funny, exceptionally smart, an incredibly talented artist (he'll tell you himself ) and he has a near photographic memory. He is also socially inept, doesn't pick up on social cues, has very few friends and is extremely introverted. He's never connected to many people except for me, his sister and my family (parents, sister, brother, their spouses and children).

As a young boy, he HAD to be dressed as Spiderman at all times. He was very uncomfortable otherwise. Even when he started school, he would often sneak his costumes under his clothes. He is extremely sensory. He hates changing from wearing pants to wearing shorts and vice versa. He refuses wear new clothes, even after they have been washed. He has to have certain collars, sleeves etc. He can't get his pants wet because they feel weird and he has a total breakdown. He has problems detaching from me to go to school (not as bad now as it was in JK).

I have been through early bi-polar detection (they said no) and then they referred him for testing for ADHD. He was diagnosed ADHD Combined Type and ODD (which is very concerning for me). I have done a ton of research for years now and I have a strong suspicion that my son has Asperger's. His diagnosing doctor has finally agreed to refer him to have the Autism spectrum testing done but she can't promise that they will accept the referral.

I guess what I would like to know is if it sounds like he could have AS? I figure that you all are more of an authority than doctors are since all of you live with it! If you could give me any suggestions or feedback it would be SO appreciated! I just need to know what makes my son the awesome and unique little man that he is so that we can move forward in the right direction to get him the help that he needs in the areas that can cause stress to him in his life.

Thank you so much in advance for any insight that can be given!!

Maybe. What you say all points to it, but isn't enough to make a definitive statement.

Good for you seeking answers. Thank you for seriously considering this and not just dismissing it because you don't want to think there's anything "wrong" with your son.

If it turns out he is, congratulations! But even if he isn't, welcome to WP. Please feel welcome.

Google and try the MCHATS test, it's designed for screening of younger kids, but it think you might find the questions in themselves illuminating, especially in retrospect

Dandelion, I just noticed and 'got' your signature, I it

Aww! Thanks!

Phaedyn...
I suspect your suspicions are correct!

I'm going to say the spiderman thing is the most notable..
That you say he HAD to and that he snuck it under his clothes...
Well let's just say I'm no professional, but congradulations on pushing for an AS diagnosis, because you are likely on the right trail.... especially since you, as his parent, don't think he's really got ODD... The symptoms of AS can easily look like either ODD or ADHD when someone without experience (or who doesn't look for the child's REASONS for the list of 'symtoms' he presents) examines the child and the history.

Welcome to Wrong Planet. Feel free to pull up a chair and loosen your tongue because you've found your ear, and likely your primary online support group.

PS - even if he's not on the autism spectrum (and if you believe he is, keep asking and reading posts here no matter what doctors say) there are people here from all diagnoses and with family of all diagnoses related to social and behavioural troubles / challenges... So you have a warm happy spot here for all your questions, research, hopes, and ventings...

So Jump in, and join us while we play in the multicolored plastic ballroom of life....

That's the description of my ADHD son - BRILLIANT, but his brain is a speeding bullet . meds help tremendously with a lot of it (just not the organizational stuff).

The rest sounds like ASD.

My son was Batman until just recently...and now only because he (or maybe we) recognizes that it isn't socially acceptable for 10 year olds to wear costumes (plus the costumes just don't fit anyway) We did manage to keep the costume-wearing at home.

The last meltdown we had at school was because I stupidly walked my son through a puddle (the streets were flooded, I couldn't figure out a way around) and he wound up at school with wet shoes/socks and pants.

Nobody can diagnose your child over the internet, but I'd say it is something to look into. I would make sure you go to your referring doctor with a list of all the things you can think of that might fit the diagnosis - make sure you specifically mention each sensory issue, anything like stimming: hand flapping, shirt chewing, foot tapping, pencil chewing, humming or other noises, etc. and detail the social issues specifically; don't forget to mention the enhanced visual thinking abilities. Hopefully that will get the referring doc on your side to get a diagnosis. Good luck!

Well, whatever the official letters may turn out to be, I suspect you belong here and welcome. I just wanted to add that even without a diagnosis, there are lots of things you can do to help your son, especially with sensory needs. Things are so much better in this area these days. So hang in there, seek information, ask questions...

Oh wow! Thank you all so much for the warm welcome and the helpful advice! You have no idea how appreciative I am!

I didn't mention that Matt has/does suffer from absence stares, has no ability to make eye contact and really has very few friends. It's the socialization and sensory aspects that has always been the most confirming to me that AS may be a viable diagnosis.

The ODD diagnosis is upsetting to me because I feel that they don't see WHY he doesn't follow direction. A lot of the time it's a coping mechanism because the class is being too loud or that they are asking him to do something that he views as being hypocritical (tell him previously that he can't do something like running, then they tell him to run in the gym - he can't reason that it's ok in one place but not in the other).

I intend to pursue further testing for sure. I have not committed to medicating him for ADHD until I can be certain that he is ADHD. It's just frustrating that in the school system in our area don't do IEPs until Grade 3 and his grades are not reflective of his ability. He's a B- student in art because when they tell him to draw a house with a tree beside it, he draws a mansion with a forest, some kids playing, grass sky, birds etc in the same amount of time it takes the other kids to do the assignment and his work is 1000 times better.

Thank you again so very much! I'm so glad that I found WP!

Just an FYI that this is illegal for them to refuse an IEP based on his grade if you are in US (I don't know about other countries). See wrightslaw.com for more info. You can have an IEP in preschool.

Oh Damn. Your kid and I share a name. Now I'm emotionally invested in your kid

Soooo much of what you write sounds familiar to me, so I would definitely look into it. ASD has a very different protocol than ADD or ODD, so you will want to know. Most particularly, ASD kids are responsive to environmental changes (external) much more than medication (internal), and both ADD and ODD are paths they tend to medicate (my daughter is probably ADD and we're just not telling anyone; we're working with her on work-a-rounds, just as we do with my ASD child, and have been making real progress, so even with ADD I think they can be far too quick to medicate).

ASD kids can easily present as both ADD and ODD; many parents have been down that path, of getting the wrong protocol first, and it can end up really frustrating the child. As you have noted, you child may be ODD not out of personality, but out of a true inability to move from platform A onto platform B. Figure out how to gently move him, and the ODD disappears.

I haven't heard before of schools that wait for grade 3 to do an IEP. Unless you have a wonderful little enclave that perfectly adapts to each unique child (a school philosophy that isn't always as perfected in practice as those espousing it hope), there will be times a child needs an IEP.

yes, if you are in the US, they can do an IEP very young. My son has had an IEP since he was 3 yrs. old and began in the special needs pre-k program.

It is impossible to say whether or not your child has Asperger's Syndrome (AS) based on a few paragraphs, but it does sound like it may be possible. I would recommend that you do some further reading and see if anything clicks. Your local library should have a few books by written Tony Attwood which do a good job of describing the condition. If you seem to be on to something when reading about AS, then feel free to stick around and learn more.

As far as other things go, if your child does have AS, then the diagnosis of ODD is likely a misdiagnosis. All too often, children with AS tend to seem 'defiant and oppositional' when they don't do what is asked of them. The real problem is trying to take a square peg (child with asperger's syndrome) and stuff them into a round hole (standard expectations). When that happens, and the child is inevitably unable to live up to the expectations, then you have problems.

Lets put it this way. If I asked you to go out to a parking lot, and move the cars around into different parking spaces, you couldn't do it. You just aren't strong enough to lift and move cars. It doesn't matter what rewards I offer, or what threats I coerce you with, you can't do something that is beyond your capabilities. Labeling you as 'oppositional and defiant' because you don't do what I asked isn't going to do anything other then slander you and make the problem seem like it is your fault. If I stopped asking the impossible, then you wouldn't be seen as 'oppositional and defiant'. Not because you had changed, but because I changed my expectations of you. Likewise, once you get to learn more about asperger's syndrome, you can figure out what is and is not a reasonable request to make of your child, and once you stop asking your child to do things that he can't, then he will suddenly seem far less 'oppositional and defiant'.

It is also important to point out that just because your child can't do something now doesn't mean that he can never do it. If I were to give you the car keys to all the cars in the parking lot, and then ask you to drive the cars around into different parking spaces, then you would be able to. The task would be impossible to do without the keys, but once you have the proper tools, it becomes much easier. Likewise, knowing about asperger's syndrome, and the problems that come with it, allows you to understand where the problem is, and then find the proper tools to deal with it. Conversely, just labeling the child with ODD and trying to punish him into submission does nothing other then cause the child more problems, and make him miserable for not being able to live up to an impossible standard, without the proper tools.