Frustrated trying to get Dx
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| Mon, 11-07-2005 - 9:57pm |
After finally convincing pediatrician my kids had problems, and after spending six weeks and multiple hours on the phone between various therapists, clinics, and insurance, I finally got an evaluation appointment for two of my kids with AS therapist. After meeting with her for two hours, her diagnosis is that my kids aren't AS (or any autism related disorder) but just need better parenting (she didn't word it as such, but that's everything she hinted at and what she described in the "homework" she gave us). I went three rounds with her in the office trying to convince her that we DO utilize consequences and that my kid is NOT being stubborn but truly can't psychologically work his brain around whatever the issue at hand is. (For instance with food, ds will forget from day to day what food he likes. Something he loved the day before, he's afraid of today, and will choose to skip many meals and be hungry rather than eat something so horrible. He's truly not being defiant - I know the difference when he's being stubborn and when he's freaked out.) I am livid at having spent so much money we don't have just to be told I'm a bad parent. I have two kids with issues and two without. So, do I just parent two of 'em better?! Is it possible I actually know my children and can tell when they have a problem that needs to be addressed?!
I was also told that my kids' bowel problems are simply a result of their being afraid of toileting. I know the difference between fear and voluntarily sitting on the toilet, spending an HOUR straining and trying to produce unsuccessfully. I can't get them OFF the doggone toilet! There is NO fear. (I am aware that many kids with my kids' bowel problems DO have toileting fears, but can you not believe me when I repeatedly explain how I know there's no fear?) My dd used to ask to have a rectal temperature taken because it relieved her bowel discomfort. I don't think that's fear! Again, it's just that I'm a stupid parent, unaware of my own kids' behaviors and issues.
I spent a couple of hours before the appointment writing about three pages each of examples of concerning behaviors about each child. There are many behaviors I forgot to include, but you'd think three pages each of information would be enough for the therapist to recognize some concerns. She did acknowledge that there are a couple of anxiety type issues we can address, but didn't really give us a dx for them or identify what she thought were issues.
I don't care whether the diagnosis is AS or something else, but I KNOW this is not normal behavior for children or people. I also KNOW that it significantly impacts their (and the family's) daily lives, their friendships, their happiness, etc. It's been 11 years of various doctors dismissing my concerns, and it's getting really old, really fast, especially as the kids get older and their frustrations are growing exponentially!
Anyway, we have follow up appointment with therapist this week, and if I don't get more positive info from her, I guess we begin the search all over again.
Just tonight after reading another post I had a light bulb moment making me wonder whether maybe part of their problems is bipolar (family history of schizophrenia which is related to bipolar). I still don't think that's the entire dx 'cus there are other symptoms that still make me think AS (or at least some parallel symptoms), but I'll mention bipolar to the therapist and see where that gets us.
Anyway, I guess I'm just venting, but you're a crowd that probably understands. Thanks for letting me vent! Maybe one day I'll get someone to believe it's more than bad parenting. I just don't know how broke I have to go before I get there!

Hi there,
I feel your pain. I have some good friends with both AS and BP in thier family. One friend has 5 children. On BP and AS, One BP, one PDD-NOS, one Mood disorder - NOS and one not yet diagnosed. It is possible to have both in the same child and family. Common even. I have another friend with a BP son and her other son is darn close to AS though not yet Diagnosed.
I am sorry for the frustration. I certainly don't like the better parenting line. I got that from one of Cait's teachers once. It was awful. They tried to dx her with conduct disorder and it was my fault. This was after she was diagnosed PDD 3 years earlier by a neuro-psychologist, but they still tried to refute it. Rediculus. Even with the current developmental ped and neurologist also concuring on the ASD diagnosis. Some folks don't get it.
I hope you get more help and answers soon.
Renee
I'm sorry for your frustration. I had a similar experience when trying to get my dd dx.
I wanted to ask if you've tried magnesium for your kids' bowel problems. My dd used to be constipated all the time. Magnesium and other biomedical approaches helped so much, not only with the bowel, but also with mood/behavior.
Samantha