No DX still searching for what's going on.

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Posted this before, but here goes again.............I know there's something different about my brother, Taylor, but no one else seems to see it. He acts 100% different in public than at home. He knows what he should do in social situations, but doesn't. I know that he has sensory integration dysfunction per a 10 year old DX and those issues are still current (I even looked at the eval report a couple weeks ago and I was amazed at how little his sensory issues haven't changed). We are going through an IEP right now, but how much will that actually show? His psychiatrist (Iwho's suppose to be the best in Milwaukee) said he's putting a lot of stock in the IEP (we've only seen him twice), and that it should give us some of the answers we're looking for. ? Here's kind of what he's going through.

Sensory issues are effecting all aspects of his life including general hygiene, how he interacts with other teens, and even letting me hug him is difficult. I also think that because he has so much sensory input at school and is able to control himself, even though he is at his max, he comes home and lashes out physically against me and my husband. He is also bothered by other people's movements (like me shaking my leg because I'm antsy or me and my husband holding hands), is that normal for sensory issues, a teen thing, or something else completely? Is it possible to have SID without a PDD?

He has very bad motor skills. We are typing (together) most of his school assignments; otherwise they are illegible. He has a strange gait and can't ride a bicycle. He often doesn't want to play football or other sports with other kids his age because he knows he looks "strange" and clumsy, though this has gotten better because he had made friends with neighbor-kids, but they just moved out of state.

Taylor can't really pick out what's important after he reads a paragraph or book. This presents it's own issues when dealing with school. I have his teachers email me the chapter test dates and make notes for him where I write down the questions and we go over them together and he has to find the answers.

When he gets a gift he will smile slightly and say "thank you" but does not show any significant sign of happiness, where as other children might jump up and down. On the other hand, he will get what I call "heightened moods" for what seems like no reason. He can be completely wired, giggly, literally bouncing off the walls, or get so upset over something petty, like not getting a soda, that he kicks in his bedroom door and we have to remove it completely because it's warped.

The psych said he thinks Taylor has MR but I don't think there's any way that's possible. I've been with Tay his whole life, minus literally one year. He says this because while he was asking him questions Taylor would pause and look around searching for an answer to a question he already knows the answer to. He thinks hard about what the other person wants to hear, what the "right" answer is, before he does answer a question for any professional. But with family and friends, he's nonstop talking, quick witted.

Just several days ago he had his speech eval for the IEP, and he did wonderfully, especially on the social-based questions, and that really made me think maybe it's not AS, even though he doesn't practice the things he does know. Like how do you end a conversation, he answered appropriately, but in reality he will just walk off while you're in the middle of a sentence.

So I guess my questions are:
Should I search for a new psych?
Is an IEP just as well as going elsewhere for evaluations?
Are these signs/symptoms of AS or another PDD?

First, my son is a perfect angel in an office with a professional, and he KNOWS all the right answers, and is extremely intelligent, insightful and comes up with great strategies for solving issues...in an OFFICE setting. Bring him in the real world, he cant utelize ANY of the stuff he knows. It is to the point of MADDENING. I almost wish he DIDNT have the ability to be so rational in an office or small setting, casue it sometimes makes me mad, like if he knows all this stuff WHY cant he do it??? I KNOW why, casue in those small settings, there are less sensory stimulations, ess distractions, nothing really going on but a hypothetical question, in a nice calm quiet setting. THis is percicely WHY it took SOOOO long to get my son diagnosed. I say so long casue I KNEW in my heart there was something underlying since he was about 4 and it took almost 2 more years to get anyone to LISTEN and not just see my son in an office and write off all the other issues.

Keep going, keep seeing professionals until someone hears what you are saying. An IEP is NOT the same as getting a diagnosis, in fact where I live the school district cannot diagnose, we have to go to a psych, psycholigist, dev pedi, neurologist, etc... for the official diagnosis.

Sounds a lot like my son, who has Aspergers. He is very hugh functionin, or mildly effected, howerver you want to call it.

good luck!

Thanks for your reply. It helps to know we're not alone... and people are wrong in thinking we're completely off our rockers here. Of course people think we're insane because when he's in the view of professionals he's an angel, he knows the right things to say... ugh.

that is exactly my son, and he isnt doing it to be manipulative, he seriously can think in low stress situations, whereas in other situations he is a different person...

hang in there!

Part of any real evaluation needs to include observation in the classroom and hopefully other settings as well. My son at 6 yo can tell you what he is "supposed" to do in certain situations or he can rattle off 3 or 4 possible ways to resolve a conflict with another student but he is not able to implement these things in real life. ASD is primarily a social deficit so how can you evaluate for it unless you observe actual social interactions?

Many of the things you describe are classic AS characteristics - not wanting to take care of hygiene issues, not wanting to be hugged, showing little excitement at being given presents, lack of coordination, acting differently at home than at school, etc.

Not sure what MR is? If I were in your shoes I would urge the psych and the school the observe him in the classroom setting on multiple occasions. Then they can tell you whether or not they think he has ASD.

I vote for getting another psych. You want a professional who will give you information and recommendations to take TO the IEP, and to help you fight for services at the IEP meeting, not one who is expecting the IEP team to figure it all out! A psychiatrist is the wrong speciality -- they deal more in mood disorders. You want someone who has "developmental" in the title -- developmental psychologist, developmental pediatrician, or a neuropsychologist. Perhaps someone qualified to administer the ADOS (Autism Diagnostic Observation Scale). Ideally you want someone to go observe his behavior and social skills in the real world, to determine his pragmatic speech deficits. Perhaps find a BCBA (Board Certified Behavior Analyst) to observe him in the classroom and with peers at school.

Thank you for all of your replies!! I really appreciate it. I do believe that we have a referal for a neuro at Children's hospital. Calling today, hopefully it goes well. IDK about this psych. He acts like we're just insane and again he said that it seems like he doesn't have a PDD.

MR is mental retardation. Of course that's the "old" way to say it, I guess that's not the technical way to say it anymore, but yeah.

You need a specialist. Many of us have been on this particular roller-coaster, but once you find somebody who deals with a lot of it, especially high-functioning kids (and this is a question to ask) they will see what you see.

I would also recommend making sure that he's a bit off-kilter on exam day: this sounds cruel, but we happened to have the two evals on days when DS had been thrown off his schedule and was overwhelmed, and he just wasn't able to keep up the veneer of "perfect" kid that he maintains so carefully. I don't mean torturing him, but I would "map" his outbursts (good to do anyway) and make the office visit coincide with when one would typically happen.

Document what's going on at home carefully. Bring it with you to the assessment. Use this format, which, BTW, is what your school should be doing: http://mfba.net/fbabip.pdf