Expert: Trey McGowan - 7/27/2008

Question
Deep sigh...5.5 years later, services with our regional center, school district, world Experts at UCMIND, we still do not have a diagnosis(I do not mean label) but something to help us help our son. Our low toned though better now, severely speech delayed child, better now, with torticollis, toe walking and hand flapping (the last two resolved by age 4) was at 1 time evaluated for PDD, Apraxia, Cerebral Palsy, Aphasia, Sensory Integration, ODD, ADD, DCD,Behavioral problems, immaturity, Aspergers and now anxiety. The opinions change but the heart of the matter is that our kiddo is not neurotypical, has issues and is not connection with peers or behaving age appropriately. In addition to special ed, we provided him a developmental preschool so that he could have as much childhood as possible. He loved the sensory experiences and creative outlets but alienated his peers with poking, prodding, goofy behavior. No one can agree including the world renown experts at UCMIND. We have had many EI treatments including PROMPT, OT, Sensory integration, Music Therapy and discipline with a Behaviorist. I see therapist to keep myself together but it very difficult because we do this blindly. I access support groups, blogs, read a ton and yet, we are circling the drain. Even though spectrum was ruled out, behaviors continue to prompt people to suggest he is autistic or has Aspergers or emotionally disturbed which breaks our hearts because we have tried to do everything early but this whole thing is crazy making. We use many techniques but the behaviors rear up after going docile for a while. We are careful with diet and sleep and routine. We have an advocate and an IEP team, and all of the pitfalls that come with.
Problem is that our son functions better in structured Special Education environments that are familiar, with visual support and is referred to a very bright however he  is not industrious in downtime, not socially appropriate( more provocative) disruptive, interruptive and overly emotional. Everything comes later for him other socially and emotionally, outside of his very interesting thinking and keen observations and a brilliant memory for detail. He does  not have fixed obsessions or interests but of course like mechanics but also cooks and draws,hence, is well rounded, plays with his sister but provokes her and others, especially caregivers or teenage shadows, swim teachers, karate teachers..he eats them up and spits them out but not in a mean way just in a very embarressing way. We have environmental control at home but sometimes it feels like we live in punitive mode and that concerns me about his self esteem. He is either very manipulative or something is still not right as he can get people upended and still acts as if he has no reason why ( lick, poke, prod) and is growing more disrespectful at times. WE are firm yet we feel like we are getting worn to the ground and his very bright 2 year old sister is imitating behaviors. Our Dev. Ped is frustrated with her peers and suggested we have him reevaluated through out regional center. I cannot find any info online about kids who do not meet criteria fully but still have issues. He is starting regular kindergarten with out an aide but his IEP includes four 1 hour observations by school psychologist who admits concern. We have worked with him and on his behalf since 9 months and are worn to the bone and do not believe we could let this go undiagnosed and are grieving all over and just not sure what to think. He has had every genetic test and yet I see neurological quirks, blinking, squirming, grimacing at times( no seizures) and totally tuning out and changing the subject. We are older parents and have no one alive or around and want to stay healthy and positive and yet I think both my husband and I are feeling very down and helpless about the whole thing. The main question is does this ring a bell of anything similar and do you know of children who are very hard to diagnose and do you have any suggestions. We love our children immensely and just want them to have solid age appropriate development and will do whatever or not do whatever deems reasonable.

Answer
Hi there, CC!

First off, my usual diplomatic answer goes here: I am not a doctor. This means that, if you are looking for a diagnosis for your son, I cannot even really offer a tentative one. This is because I don't want it to be seen as gospel. I understand the stress of looking for a diagnosis, and wish that I could be of assistance there, but I cannot legally offer anything of the sort. Nor would I wish to try; there are just too many 'things it could be'.

As for the second part of your question: yes. There are many children that are hard to diagnose. TIn fact, most of them are; if it were an easy diagnosis, there would not need to be the extended evaluations that many people take on the subject. This can come from a number of different reasons: the main one being that there are so many levels of ASD that misdiagnosis is all too easy when the child is showing 'indefinite symptoms' that could belong to any one of them, or even to other Developmental Disorders both genetically identified and not.

Sometimes, finding the right diagnosis just involves doing exactly what you have been doing: taking him to different doctors, all the while dealing with the symptoms themselves. There is a suggestion by your doctor about doing just that: I suggest you take it. Just remember, at times, even when one *does* have a diagnosis, the best (or only) thing that can be done is dealing with them on a case-by-case basis. Which means treating them piece by piece, and dealing with the problems issues with an expert. I.E. the 'provocative behaviour' should be treated just like that, and thus some all-important early work done even while you are looking for the cause behind it. Finding the delicate balance of *how* to deal with it might not be easy, but if you bring up your concerns with local therapists, you might be able to find one who can help with these difficulties.

I hope this was able to be of some help. Due to an emergency move, I fear I won't be able to answer follow-ups for a period of time, but if you have any, you can either hold them until I return, or direct them to my colleagues on AllExperts. I wish you all the best!

Trey