How important is it to get a professional diagnosis?

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I know this sounds like a silly question but what is an "official" diagnosis going to mean for my daughter? What will it do? I know, without a shadow of doubt, that she Aspergers. I have done extensive research and Asperger's explains all the "quirky" pieces of her life. She is 13 years old and has functioned fairly well until middle school and due to problems at school with bullying I began homeschooling her. I began to see the trends stronger since I am with her all the time and doing some research and although I knew about Asperger's, I had never seen it beyond a text book definition. It suddenly felt like a light came on and AS became a living thing. I know that is what she has, I have no doubt. I have gotten some books and behavior management strategies that we are going to try to implement, but I want to know if getting an official diagnosis is a help or hinderance in the long run. I know it would help us get stuff through the school district and she does want to return to high school though I am not sure that desire will last, but I think IEP's are really nothing but a joke that makes the school district feel like they are doing a good job even though the solutions are meager at best. I know that on this site everyone seems to differentiate being diagnosed or undiagnosed and wonder why that is so important to everyone. Thanks for your time and I look forward to an opinion or two.

I had to have an official diagnosis to qualify for Social Security Disability.

You would only need to get an "official" diagnosis if you wanted to get certain therapies covered by insurance or something. School systems will do their own testing and give you a "school diagnosis" which can qualify them for school based services and an IEP, but doesn't really do anything for private therapies.

so, it only really matters if it matters to you or her.

my son is undiagnosed. He is getting tested through the school, but already has an IEP in place from previous testing. I only differentiate him as undiagnosed because while I am almost certain he has Asperger's, I suppose it's possible he doesnt. It's not wishful thinking or anything, I just have had Doctor's look at me cross eyed when I suggest he has Asperger's, so it puts doubts in my head sometimes! But, to me and to educators that have worked with him, he seems to have Asperger's.

We have a school use diagnosis, which has been perfect for us. It gets my son an IEP and that document is actually very important, for it ensures you a voice, even if services are not indicated. Want to meet with all your child's teachers in one room and have a frank conversation about the one child's needs and have everyone brainstorm how to work together to meet them? You need an IEP. You will get nothing in the way of accommodations without some sort of IEP or 504. What a district requires in order to create those varies.

But, then again, maybe you don't need accommodations. I expect my son will start high school with an IEP document that basically says he has rights to a few things, but I don't expect him to use any of them. He has graduated from all his special services, and he is ready to test his wings in the "real" world. After all, at some point in his life he does have to live in the real world figuring out to best adapt his life to his unique strengths and weaknesses. We'd like to test it out while there is still a nice, solid safety net.

The school asked us to pursue a medical diagnosis, but since their services were not dependent upon it, we declined. My reasoning was simple: I had pursued the school diagnosis to meet a need, and that need was now being met. Getting a medical one would be redundant with respect to that need, while giving my son a permanent label that he may or may not be happy with when he gets older. Since I had no pressing need to get the medical label, I liked the idea that what he has now can be left behind someday if that is his wish. He'll be able to decide for himself as an adult if he wants the medical label, or wants to embrace the label in any version. It's his condition and his life, so leaving some element of choice open to him was very appealing to us. Since we had the luxury of doing so.

So ...

I am of the belief that labels are only as good as what they get for you. Most of the children here are diagnosed because it is virtually impossible to get anything your child needs without that. Many of the adults are not diagnosed because they have no need for services (at this stage in their lives they've adapted, even if there is bitterness about it), and are comfortable having found the answer for themselves. The adults who do get formally diagnosed may have any variety of reasons, including:

1) A need for disability benefits or social security
2) Accommodations in the work place
3) Something to help relatives understand who they are
4) Knowing with certainty that the AS diagnosis fits, because it is what they need to make peace with themselves or their pasts
5) Establishing the medical history for a child in need of diagnosis

When none of the above apply, the preference seems to be to skip diagnosis. We don't know for sure that it can never be used against one with respect to medical insurance, employment, divorce, or child custody. Caution, then, says not to raise flags that aren't needed.

Given your daughter's age, I think she should be part of any decisions about obtaining, or not obtaining, a medical or school diagnosis. She may or may not have an opinion on it, and you aren't bound to agree with her opinion if she has one, but she is getting close to the age when she will have to make these decisions for herself, so getting her involved in the process of decision making now is an important step in her development.

I will say this: we had a school diagnosis (and a really flimsy one, at that) and it was not enough either for us to better understand our son, nor for the school to offer him what he needs. Because of that, we finally pursued a medical diagnosis with a comprehensive program that does clinical testing.

I think the testing was incredibly valuable, especially since they allowed me to sit in an observation room for the tests. Not only do we have a diagnosis that makes sense (even thought the school diagnosed DS with AS, it was such a poor diagnosis based on such flimsy evidence that I didn't believe it - I was open to it, but none of the criterion they used to get the diagnosis fit my son in real life.) but I also have a much better understanding of what the quirks mean and why my son is the way he is. As a result, I'm able to be a better parent.

We are kind of a unique case in that my son is able to hide his AS by having a HUGE repository of appropriate scripts in that brain of his; fortunately, the diagnosticians were wise to kids like him and were able to explain the mechanisms behind what was going on.

However, I don't know that a diagnosis is a requirement, or that every kid needs a diagnosis - and the key should be what the diagnosis offers you: better understanding, a better plan of action. If they're just going to toss a sheet of paper at you and leave you alone, you're better off on your own.

My son's diagnosis gets us some regional center services and medi-cal, which has been very helpful financially. Like the above poster, I also found the diagnostic process educational.

I don't think you should get one. It's only useful if you need services. If you don't want or can't get or wouldn't benefit from an IEP, there's no point. On the flip-side, it can do harm. Stick with self-diagnosis.

In what ways do you think it can do harm? I'm not being argumentative, just curious. I hear people say it and I haven't figured out exactly what they mean.

Thanks all for your replies! I have be given even more to think about! We are on the wait list for diagnostic testing and the list is 6 months long so I have a while to think about it. My daughter wants to try and return to high school next year so any skills that they would help with and training won't even be available through them until after she has returned to school so therefore I have to try to do much of it myself. I am really not sure how much this will work because to her I am just her dumb parent and I am picking on her, and according to her "no one does any of the stuff in real life that I am trying to teach her". She's very resistant to change especially with the feeling that she is smarter than everyone else. I explained to her that some people Mozart for example were smarter than everyone else, but because he didn't have the knowledge in social skills he wasn't able to make it in this world, and she has to be able to trust that what I am telling her and trying to teach her is going to help her. For so long I have felt that she was constantly manipulating me to get what she wants that I always would tell her stop trying to manipulate me, likewise people were always manipulating her and she would always fall for it so I'd also tell her "stop letting people manipulate you". She really didn't understand why I said these things to her, now I know it's the AS, but over the course of time I have basically shown her I think everyone is manipulating and she thinks I always think that, which I don't. I have to re-teach her that she can trust me and that I have only her best interest in mind. Ug. Life is hard, and it's even harder with AS.

My 12 year old son was diagnosed by his psychiatrist last year. He was diagnosed with ADHD, OCD and anxiety probably 7 years ago. Although I don't like for him to be "labeled"- I am glad we did get him diagnosed. Of course it helps with him getting help at school, but we were really glad when we finally found out that he had ASD, that was aggravated by the ADHD and OCD. He's had this weird obsession with asking kids to lift their shirts to see their bellies. He has picked this up from a tweeny TV show and he sees it as cute and funny, ( He doesn't understand that this isn't socially acceptable) The kids, parents and school of course does not like it, but since he has been diagnosed - the school has worked with us a little more because they know he has a development delay and social skills issues. In our case, I am glad we did have him diagnosed. First of all, I had know idea that there was possibly anything else wrong with him other than the ADHD, OCD and anxiety. When the doctor said Asperger's and we started checking on it - it made so much sense. He also takes medications for the ADHD, anxiety and AS.

I don't know if this helps any at all, this is just what we did with our son's situation. All the best to you and your family.

Discrimination. Like being barred from military service. And if you get married, have kids and then want a divorce, you might have a really tough time keeping your kids even if you're a good parent.

I had never thought about those possible "harms". I sure dont want my son to go into the military but he does kind of want to be an astronaut. Also the child custody thing-scary thought. We had a psychologist do a full eval for my 9 yr old son. She said he met all DSM-IV criteria for AS but she didn't' want to give him a label right now. That worked for us at the time, especially since he is at a private school so doesn't need an IEP per se. The problem for us is that without a label we're kind of in limbo. Should he go to a social skills group? He would probably benefit but how can we explain it to him since he doesn't think he has anything but ADHD? Also it creates alot of friction between me & my husband because he's not around enough to really see all the issues our son is having, so he doesn't really believe anything is wrong with him. He just covers his hears, talks incessantly about Pokemon, has a super high IQ, horrible motor skills, makes weird noises, and has trouble keeping friendships. Any suggestions or thoughts would be really great...

LOL, my son also wants to be an astronaut.

We went over this with a doctor early on - many of the diagnoses they give children do not necessarily follow them through adulthood; especially since this is a developmental disorder. I would be more concerned about this if my son were getting it just before entering college.

@keiko, you could explain it to your son without getting an official diagnosis. Like, "we think you have Asperger's, but even though most people with it get an official piece of paper where a doctor wrote that they have it, that's more trouble than it's really worth. But you have these symptoms, and we think this would help you learn some things. So long as a doctor doesn't write it down, you're allowed to say you don't have it, so it's a little safer, too, because some people might be mean to you if they know."

thanks guys, I really appreciate that. It helps alot to get some feedback. (first time i've actually posted)

My son ALSO wants to be an Astronaut! Of course, he's 4, so I'm sure it'll change a few times. Mainly, he wants to go to outer space so he can see the rings on Saturn.

Anyway, in thinking about official diagnosis or not. Can someone get accommodations in college without a diagnosis? I know you can have an IEP without an official one at least up to a certain grade.

@Dandelion fireworks: Thanks for the reply. I do think it's interesting to think about possible ways it can follow them in a negative way. But, another recent post got me thinking about it in a different light. The mother of the 20 year old who had not been officially diagnosed and was in the unfortunate position of having to encourage the young adult who was struggling to get an assessment/seek help. Perhaps an earlier diagnosis and therapies could foster some kind of acceptance on the individual's part to accept and seek out help once they are on their own. I will probably get an official (aside from the school diagnosis)diagnosis for my son at some point. I still have some thinking to do about it. I'm hoping that I can instill in him that he should be proud and not hide who he is. I think in the circumstances you give as examples, those would be sad and unfortunate events. But, I'm thinking that finding a way to get the diagnosis, give the individual the power to decide with the tools right in front of them (ie. diagnosis and available therapies) how to proceed. That's where I am now.. of course he's only 4 and I only have experienced so much as far as services... it'll take time to figure out what makes most sense... Thanks again for the response.