How important is it to get a professional diagnosis?

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I think the professional diagnosis helped ME mostly (which in turn helped my daughter). We had an especially difficult day today and pre-diagnosis I would have been having a glass of wine and wondering what I was going to do, where I was going to find help, how I was going to live my life like this, etc etc! Now, I take it more in stride and realize "the bigger picture". Yes, I still get frustrated, but it's not a hopeless frustration---I guess having an explanation made everything feel less futile.

You can have that without official diagnosis. All you needed for that was to know it-- that the diagnosis is official, that it's in her records, that isn't the benefit. If somehow the diagnosis got taken away, you'd still know.

Of course assessment has this benefit. It's a huge benefit. On the other hand, this doesn't always happen, and doesn't require the dx to be official. What I said was for a situation where you basically know this stuff, but don't have a formal diagnosis. No one who hasn't already put two and two together will read my post.

The other, sadder, thing is that a diagnosis doesn't always lead to the benefit you described. Having the word for it doesn't mean people suddenly know everything about it and can sift through the "information" available and distinguish what parts are true and what parts are totally wrong and what parts are true for some people sometimes.

Basically, I think that seeking a professional diagnosis is making a bet that without one or more of the services offered only to the diagnosed, your child will not make it far enough to worry about the doors a dx will close.

Dandelion, you are confirming the very reason I asked this question to begin with. It's very interesting to hear your perspective. We are trained in our society to go to the doctor and get a diagnosis, or you don't have whatever ailment you think you have. I talked to a close friend about this and I said I am 90% sure my daughter has Asperber's. She asked what the 10% doubt was and I said it wasn't doubt, it was only that a doctor didn't confirm it and I felt presumptious to give my daughter a diagnosis. When my daughter was a baby she showed small signs of autism- refused to look at people, rarely smiled, delayed speech, then she started talking in 2-3 word sentences suddenly and I felt relieved, she was diagnosed with a phonological disorder. She had extensive speech therapy for years with no success. We went to a neuropsychologist because we needed a non-verbal IQ test to present to the school to show she was smart so they might help her more. What a laugh. Many schools operate on the premise of grade level. If your child is working at grade level they do not feel they need to do anything extra. It doesn't matter that the child isn't reaching their own potential. Oh yeah she got a secondary diagnosis of ADHD. I never felt as though this fit. Her phonological disorder was deemed profound and we continued speech therapy and added occupational therapy in an effort to improve her overall coordination. It didn't work but she enjoyed it. Our insurance had a lifetime cap for therapy services and she reached it by age 6. Still no improvement. Time went on, we had IEP's, we addressed what we could never thinking there was anything else and constantly grasping at straws. By the time she went to middle school she had accepted a notion that her speech was what it was and she didn't want to waste anymore time in speech therapy. Through all these years I have taught her ways to improve her communication abilities by using different words and having an extensive vocabulary so she has a giant word bank to use when someone doesn't understand the word she can re-explain herself until others get it. We have always joked she has a tough skin and doesn't really care what others think of her and this helps her get by. In middle school the safety net we weaved slowly unraveled and she became a hateful, depressed, suicidal wreck. She grades began to drop and her personality disappeared. She was being bullied and complained of headaches and stomach aches everyday. She was isolated and solitary. We worked with the school to no avail. Every solution they offered only isolated her even more. She missed a ton of school because she just refused to go. My husband and I started arguing over what to do with her and she began running our family (the tail wagging the dog so to speak). I began homeschooling her for 8th grade. She came back to us little by little, but some of the personality quirks and emotional problems remained, very, very confrontational and completely disregarding of others feelings. I discovered Aspergers syndrome through talking to a friend whose son is autistic. It explains my daughters whole life to me. And I talked to her about it and she completely accepts the diagnosis. There is wayyyyyy more signs of ASD than I have outlined here but I think these are things I can work with her on if I have access to the tools to do so (Social Stories?) so I am reading extensively to come up with a plan to help her. The only place that does diagnosis and treatment here told me that our insurance won't pay for any of it and it is all out-of-pocket. So, costs vs. benefit is where I am in my thinking plus looking at her life down the road. They said she would continue with speech therapy which she's not to keen on having had it 5 times a week for 10 years we're not sure really how much continuing that will help her. Is it possible to do what they do in therapy without therapy? AND will we train it out of her so that if she needs additional help later and wants to get a diagnosis the door will close and she won't be able to have a positive diagnosis? Sorry for this long post, it is hard for me to separate all this information out yet.

Insurance regulations for mental health services recently changed (like, in the past year.) Make sure that "lifetime cap" is still in effect and that your insurance still doesn't cover it.

When we went to get our professional diagnosis, one of the things that we learned is that schools are responsible for a child's social education and development as well as their academic development. Schools don't like to be held accountable for this, but they can be.

A diagnosis means different things at different ages. Your daughter is young enough to benefit from a diagnosis. Thirteen can be a difficult age with or without Aspergers. If nothing else, giving her a physiological reason she feels out of sync with her peers may help her learn how to cope with them. My son was 48 when he learned he has AS. He was relieved to discover there was a physiological reason for the way his mind works. He is used to researching so took every exam he could find and decided there was no point in being diagnosed. (He spent a lot of years with psychiatrists and psychologists in his youth.) None of the available programs would change his thought processes and he had no interest in medication. He is well educated and finds his brain works for him as a problem-solving engineer. Jeanne Denault