Benefits of having a diagnosis?

[mo2]

I can see a LOT of benefits to having a diagnosis, but some people think we over-label kids these days, making things that were once thought of as quirks into disorders. And if one doesn't plan to medicate, what will a diagnosis really change? It won't change the child.

 

(I'm reserving my own opinions here for the sake of discussion.)

[sbgrace]

In our case there were clear benefits in dx. for some issues that I don't think anyone would debate. But the autism spectrum dx. I've heard some argue about in different places. My kid as he looks at this point anyway would probably not have been diagnosed many years ago when awareness was less and might have been seen instead as "weird/unique/clueless/eccentric/quirky" or whatever.

 

In our case the autism spectrum diagnosis (PDD-NOS in our case) helped me as a parent meet his needs. I was doing a lot of analyzing and worrying about whether he was or wasn't on the spectrum--hoping he wasn't and fearing he was. When we got the diagnosis all that was settled and I could just enjoy him at least after the initial grieving stuff anyway. So emotionally it helped me.

 

It also helped us target our choices for therapies and such to his particular needs. We began autism specific therapies that we weren't already doing because I couldn't justify the cost for an "in case he really is autistic" scenario.

 

Finally, I think in the high functioning autism area and related areas like NVLD that meet that "quirky" type of criteria there are many adults who wished they had known growing up what made them "different" or in some cases wished they had help in specific areas rather than struggling. In my opinion even the mildest of spectrum people are going to struggle in certain areas without help and for my son I want to do what I can to make things easier for him.

 

For my particular child the "we over-label kids" debate means nothing. I only care about what's best for him after all.

Edited September 30, 2010 by sbgrace

[Murmer]

For me it is a way to validate to others that its something that needs accommodation and different expectations. It also gives me a starting off place to jump from so that I can help her the very best way possible and sometimes without a diagnosis that hard. So yes I am seeking to "label" my 3 year old but everyone has labels. I rather her be SPD than be labeled the out of control aggressive child that no one wants to deal with.

[Guest]

I fully agree with what the first two posters have written.

 

Also, as the parent of an older child (14) on the spectrum, I see now what I read about earlier: the need for the growing child/young adult to understand and be able to discuss her differences when it is important to do so. Some of these differences will follow her to college, where she will need to know how and why and where to seek accommodations and, should she need it, emotional support.

 

My dd also needs to know, both from me and from professionals, that her differences and challenges are the result of neurological wiring/deficits and not somehow the product of her own personality or something she has done "wrong." Undiagnosed adults often suffer from depression and have elevated suicide risks. This is not unique to them, and certainly a diagnosis is not a fix-all preventative. But the risks are much higher when a person on the spectrum goes under the radar, or is "unlabeled" so thought just really odd and/or rude or disgusting or uncontrolled.

Edited September 30, 2010 by Guest

[JennW in SoCal]

Chiming in here and agreeing with what others have posted.

 

I have a young adult child now who has an alphabet soup of labels. The labels don't change the fact that he is a delightfully quirky young man, but it has changed how he sees himself. He knows his limitations and challenges, and most importantly knows that he isn't simply stupid. He knows how to advocate for himself, knows when to ask questions, knows how to laugh at himself and knows how to navigate and enjoy life. On a practical level the diagnosis is important for getting accommodations in high stakes tests and in college. The Disabled Student Services office staff have been wonderful in helping my son navigate college, and he has the option of taking tests in a quiet location, of having longer for tests, of having note takers or tutors.

 

Having a diagnosis doesn't mean you see your child primarily as a label, nor do you want others to see him as a label. But when you are utterly exasperated that diagnosis helps you take a step back and look at the situation more objectively -- is this kid simply being an obnoxious adolescent snot or is the [fill in the diagnosis] at play here too? I ONLY introduce my son as an Aspie when the situation calls for it -- on this board or in special circumstances in real life.

 

Medication is not an evil choice, either. My ds got his first label at age 6 at which point we decided to homeschool and accommodate his quirks rather than medicate. Several years later when we finally opted to try some drugs we discovered they make a huge difference for him. I felt horrible that I had needlessly made him struggle for so long without it.

 

A diagnosis is the first step for a family in finding the tools that will help their child. Well, really, being a caring and responsive parent is the first step, but a diagnosis and some follow up reading and therapies can make life so much easier.

 

Finally, I don't see Asperger's or ADHD or what have you as a "disorder". It is a description of some unique wiring in certain individuals. it isn't an illness to be cured, some handicap to overcome, just a different way of experiencing the world. Understanding those differences, learning how to compensate for them as a family -- that is why the diagnosis matters.

Edited September 30, 2010 by JennW in SoCal

[WishboneDawn]

It won't change the child.

 

Why not?

 

In the talk about labels we often forget that kids label themselves. They know they have issues. They know they can't focus, can't make proper sense of some letters, can't sit still. They know it causes them difficulties and causes others around them grief. So they come up with their own labels and explanations, usually ones like lazy, useless, stupid...

 

I was given a diagnoses of ADD as a teenager and I can't tell you what a relief it was. My problems weren't character flaws. And I wasn't the only one with these issues, there were others like me. Having a diagnoses changed me a good deal and for the better.

 

ETA: It's so easy for us to see the benefits of having a label is a person is suffering from MS or fibromyalgia. If it involves the body we agree right away. If it's the brain we start to back away. I blame Platonic dualism myself. :)

Edited September 30, 2010 by WishboneDawn

[LizzyBee]

Back in the day, those "quirky" kids were thought of as weird or dumb, and in most cases, they believed it themselves. They were social outcasts. I never really thought about it much until I had kids with dyslexia, but now I look back on my school years and feel so bad for how those kids were treated by both kids and teachers.

 

When I told my now 14 yo that I thought she had dyslexia, her eyes lit up. She knew she struggled with her schoolwork, and she would much rather know that she's dyslexic than believe the lie that she's stupid. When she was in 3rd grade, she was so frustrated that she'd pull her hair and call herself stupid. I thought homeschooling was supposed to prevent that sort of thing, but it didn't!

 

My youngest daughter's dyslexia is severe with many more layers, and being diagnosed has qualified her for therapy that has been invaluable. She's had OT, ST, Therapeutic Listening Program, and Interactive Metronome. Those things combined with curricula designed for dyslexic kids have resulted in amazing progress for dd.

[HeidiD]

I can see a LOT of benefits to having a diagnosis, but some people think we over-label kids these days, making things that were once thought of as quirks into disorders. And if one doesn't plan to medicate, what will a diagnosis really change? It won't change the child.

 

(I'm reserving my own opinions here for the sake of discussion.)

 

 

For homeschooled kids who are somewhat "quirky" but not seriously impaired, I can see how some parents might not think there's much benefit to be had from the diagnosis mill, particularly since it's SO expensive and $$ might be better spent on remedial materials, tutoring, etc. And this might also be true in the case of kids whose problems are more severe, provided their parents feel confident and informed enough to deal with whatever their special needs require.

 

I agree that it's important for kids to have an understanding of their personal "wiring", especially as they become aware of their learning differences. If an official diagnosis is helpful in that regard, then it is money well spent.

 

One of our kids is severely dyslexic and we were able to remediate at home, but when I began to suspect CAPD (thank you, Hive!) we had him diagnosed at 10 yo, because we thought he might need accommodations for that down the line. Ditto another son (stealth dyslexia/gifted). CAPD suspicions were also the deal-breaker in his case. Our daughter is on the autism spectrum, and we RAN to the doctor when she was 3 yo because her behavior was quite extreme. I think labels (provided they are the correct ones:tongue_smilie:) are extremely beneficial for our own use, and there's no law that says we have to share them with all and sundry. :)

[spikes mom]

A diagnosis for us means I know what to research (i.e. best math programs for dysgraphia). Also having an official diagnosis means "ammunition". Here, my children have to take standardized state testing every other year. If they don't meet standards, the district can deny my request to homeschool my child. Right or wrong, this is the way it is here. So I have a diagnosis if, for example, my son fails spelling. :)

[Dobela]

I began seeking diagnosis for Bubba when it came time for standardized testing. I wanted something 'official' to back me up if he scored low and someone had something to say about it. The real advantage though was that with the 'label' my insurance would now pay for therapies that were previously considered unnecessary. The thorough testing by professionals also taught me a lot about my son that I didn't know before. I knew it, but I didn't understand it I guess you could say.

[EKS]

It helps with communication with professionals and it helps with finding information about the various issues that he has. Also, his diagnoses allow him to get accommodations for testing that he wouldn't get otherwise.

[Julie of KY]

Does pursueing a dianosis on the autism spectrum cause a child to feel "differnt". I'm concerned that my child will know he's different, but not understand why; my husband is concerned that it might negatively affect his self-esteem.

[Ottakee]

Does pursueing a dianosis on the autism spectrum cause a child to feel "differnt". I'm concerned that my child will know he's different, but not understand why; my husband is concerned that it might negatively affect his self-esteem.

 

Depending on the age of the child, they don't have to know if you don't feel they are ready for that information. You can choose to tell or not tell those that you wish. Just because a child has a diagnosis, it doesn't mean that he has to wear it on a shirt for all to see. You can just share it with those that need to know on a case by case basis.

 

When trying to get services and talking with other professionals, it really does help to say "autism" or "Down's syndrome" or "ADHD", etc. I just makes communication easier even though we all know that kids are very unique even within the diagnosis.

[Nature]

My son likes his diagnosis (Asperger’s) and sees it as a positive trait. It has also helped his self-esteem tremendously because it gives him a reason why he has difficulty in some areas. We all have strengths and limitations, and for someone with Asperger’s, being in a category seems to make sense to him. He loves meeting other people that are “like him†and can relate to what his life is like.

 

There are so many advantages: being able to read more about the diagnosis helps you to know what to expect and know what to target to help him. It helps to document accommodations and modifications that might be needed for testing, college, work, etc. If there are behavior issues, a diagnosis is an explanation (not an excuse) that can help others understand that the child is not just “naughty.†People with a diagnosis can also learn to better advocate for themselves. I could go on and on . . . guess I’m a little biased.

[Guest]

Does pursueing a dianosis on the autism spectrum cause a child to feel "differnt". I'm concerned that my child will know he's different, but not understand why; my husband is concerned that it might negatively affect his self-esteem.

 

Believe me, sooner or later your child will know that he is different. It's better to have the reasons explained by someone caring and knowledgeable before he starts getting ignored, excluded, talked about, or bullied by other kids.

 

As far as a diagnosis negatively affecting his esteem, that would depend on how the information is given or presented, and the understanding level will vary with your child's age. There's no reason it has to be done in a way that emphasizes problems or issues, although older kids will want to discuss their difficulties and even fairly young ones will understand that things are harder for them than for their peers in some areas. It's also important to tell kids about their strengths and gifts too, to give them an idea of a larger community of people wired "their way," and to compare wiring problems with other physical problems that people go to the doctor to deal with. Many books on autism give helpful advice on talking to your child about his diagnosis; a good psychologist can also be terrifically supportive and helpful in this regard. Mine stressed that talking with your child about the diagnosis is not a single Big Talk but an ongoing discussion over a lifetime.