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Can you think of ANY negatives to having a label?


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Super high functioning aspie - obviously the label would no longer be "Asperger" but autism according to the DSM V.

 

I think it will better help her understand herself and explain herself.

At the same time, an "autism" label tends to have a less positive connotation than "asperger's" so....  I hesitate.

We've thought this since she was about three and have resisted, but her unique differences, idiosyncrasies, become more apparent as she gets older, and society is less forgiving of social faux pas in women.  

 

Thoughts?

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Yes--at least there used to be one major drawback to having an autism/Asperger's diagnosis.  It made it difficult to get health insurance, meaning it was one of the diagnoses that needed to be disclosed when changing carriers and, therefore, was a reason to be denied coverage.  At least it was this way in WA for people needing individual insurance.

 

I also heard, though did not experience it myself, of instances where people with insurance would be denied benefits for doctor visits/treatments that had nothing to do with autism but where the insurance company claimed that the reason for the visit had to do with autism (and was therefore excluded).

 

Another potential drawback is that a person with an autism diagnosis may not enter the military (at least that's what I've been told).

 

I should mention that my information about this topic is 10 years old.  The insurance issues may no longer be issues with the new laws (of course, they could easily become issues again in the future). 

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We have never had any issues with our health insurance due to a diagnosis.  Having a label means that he does qualify for some things through our insurance that he wouldn't get as easily (mental health services).

 

FWIW, my ds's issues are more noticeable as an adult.  What were quirks when he was younger are just noticeably different as an adult. Having the label as an adult has opened up the doors to state services through the Dept of Rehabilitative Services (job placement was huge for him).

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We had DS18 formally diagnosed a few months ago. We racked our brains and couldn't come up with any true negatives that fit our/DS's particular situation, and certainly none that came anywhere close to outweighing the potential benefits. He was already carrying a couple of diagnoses that could potentially cause insurance issues down the road (GAD and a couple of back issues). Adding another one didn't seem like it would matter much. Not qualifying for the military was something we saw as a huge benefit in his case (he wouldn't handle the military lifestyle well or ever go that route voluntarily) plus his already diagnosed back issues would probably have disqualified him anyway.

 

FWIW, I think the formal diagnosis has really helped DS understand himself better. That's been the main benefit, and the one we wanted the most.

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I have heard that it is much easier to qualify for Social Security Disability as an adult if SS has deemed the child officially "disabled" prior to turning 18. I finally got around to applying for my child in November (mostly because my dad wants to open up an ABLE account for her). She won't qualify for monthly payments as a minor unless something changes dramatically for our family (knock on wood that doesn't happen) but the paper trail is good to have.

 

With your family size, you might actually get a SSDI monthly benefit for her (I don't know what the income limit is for a family with 10 minor kids but I'm guessing it might be fairly high).

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I should mention that I never saw an upside to having a diagnosis, as my son's diagnosis was actually a misdiagnosis.  I am certain that if a diagnosis had opened doors for appropriate treatment, the benefits would have outweighed the issues.

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Another potential drawback is that a person with an autism diagnosis may not enter the military (at least that's what I've been told).

 

My understanding of this, having researched it fairly recently, is that it is a case-by-case basis issue and if they aren't on any psych meds or hospitalized as a result of the diagnosis, not necessarily a bar to enlistment. The same is true of LD's (if you can hack it without accommodations you're fine), etc. They have to pass the MEPS physical, including a psychological exam.

 

I served with a guy who, if he wasn't high functioning ASD, I'll eat my medals. He did just fine, he was a good tech (better than I was) and stayed out of trouble. He just wasn't the guy who was going to get picked first to be Division Petty Officer. He spent his off time practicing Japanese and drawing manga art, which were his favorite things. 

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My understanding of this, having researched it fairly recently, is that it is a case-by-case basis issue and if they aren't on any psych meds or hospitalized as a result of the diagnosis, not necessarily a bar to enlistment. The same is true of LD's (if you can hack it without accommodations you're fine), etc. They have to pass the MEPS physical, including a psychological exam.

 

I served with a guy who, if he wasn't high functioning ASD, I'll eat my medals. He did just fine, he was a good tech (better than I was) and stayed out of trouble. He just wasn't the guy who was going to get picked first to be Division Petty Officer. He spent his off time practicing Japanese and drawing manga art, which were his favorite things. 

 

This is good to know--thanks!

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My understanding of this, having researched it fairly recently, is that it is a case-by-case basis issue and if they aren't on any psych meds or hospitalized as a result of the diagnosis, not necessarily a bar to enlistment. The same is true of LD's (if you can hack it without accommodations you're fine), etc. They have to pass the MEPS physical, including a psychological exam.

 

I served with a guy who, if he wasn't high functioning ASD, I'll eat my medals. He did just fine, he was a good tech (better than I was) and stayed out of trouble. He just wasn't the guy who was going to get picked first to be Division Petty Officer. He spent his off time practicing Japanese and drawing manga art, which were his favorite things. 

 

Yeah, my step-dad was born before autism was a thing that was diagnosed, but his cognitive style didn't seem to hinder him.  He is high functioning and served successfully in the military in a tech role, then went on to work for the same company for 40 years, also in a tech position.  

 

And what this has to do with the OPs question, I'm not sure (sorry).  I guess I just want to say that I think it would be a shame for someone who is one the spectrum to be rejected from the military when it was his autistic quirks that made him so good at his job.

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Just to rabbit trail with your struggle over the words, I get it. I will say though that really the struggle was for *me* not others. Once *I* got used to saying the A word, everyone else got over it. I also think it's easier to use the blanket term (autism) and have the people accept my dc for exactly as he is, exactly as they see him, rather than having them assume things based on niched terms. 

 

So there's a definite advantage to autism vs. aspergers. Not only is it current and correct, but it eliminates bias. I HATE bias against my kid(s) in all forms. It gets so tiring to have someone say "Oh, I knew someone with that" and have them assume things. When you take the label and width out to autism, they just shut up, because they know it's wide. Remember too, you're mainly using this term with practitioners (who know what to do with it) and in private (where you're telling people what to do with it). 

 

Negatives? Low expectations. Like you wouldn't think you would do this (and maybe you won't!), but I found myself going oh he can't help it, he has autism. Like it's just this easy out, at least for me. Sigh. I think there can also be a mental process for the person diagnosed, where *they* blow things off as just their neurology and not possible of change or even fixate on it and seem to get worse. There can be weird sort of side effects and rebound effects along the way. It's not like it's necessarily going to be a smooth thing.

 

I think the insurance thing has changed, though please Lord may we not lose our insurance and need to find out. I can't fathom them undoing that, no matter what changes they make in healthcare over the next year or two or three. That would go over REALLY NASTY, mercy.

 

Ok, now I'll say what you've probably already thought about. If you go to an psych for educational reasons, and you pay for it entirely privately, what you do with those results is YOUR BUSINESS. Just sayin'. It's not like this got stamped on the dc's forehead. The money trail is what makes it spread. Think about what you're going to do with it and where the trail starts and stops. It may not be as wide as you think. You might be able to contain it.

 

Negatives to having a label. You might feel guilty and like you have to try harder to "fix" your dc. You might get distracted by professionals or thinking that you need to "do" certain things now that you "know" and you might lose site of your own observations and spark of what needs to be done. I think that feeling of needing to trust experts is very real! It could sway you or make you doubt your own sense.

 

It could be a challenge if the dc thought they were *good* at xyz (social skills, academics, whatever) and the evals undermined that. That would be a tricky thing to handle. Odds are the opposite, that the dc would like some answers. I'm just saying if they got unexpected answers, that could be a real negative.

 

I don't know, right now I find that public acceptance is so high with disability labels, that really it's a good time to have labels. The hardest part was for me, internally, not really other people. Other people just take what you say at face value and roll with it. They won't care what term you use, etc., really. 

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It would make it harder to get in the military especially certain branches. It may not automatically disqualify if they are no longer on medications and do not need accommodations but it definitely makes it harder if a military career is something they wanted.

Edited by MistyMountain
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OP, you can seek social skills help through a speech language pathologist. Or you can do work at home using materials from socialthinking.com

 

That doesn't address your question about labels, but you may find a way to address the specific challenges even without having a formal diagnosis. Some insurance plans will cover speech therapy, and some won't, so you would need to look into what would be covered.

 

With that said, I am in favor of having accurate diagnoses. In our case, the diagnoses have helped us get appropriate help for our kids while they are students. Once they are adults, they can choose whether to reveal their diagnoses to employers, loved ones, and friends. If they have hopes for a government career of some sort, they may have fewer choices than what they tell a private sector employer (just guessing, not because I have any experience with this). But most people work in the private sector, so it may not be an issue.

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It can make it difficult to immigrate to Canada.

 

http://www.canadianimmigration.net/news-articles/14042011-canadian-immigration-takes-medical-inadmissibility-too-far-140411/

 

That is probably not anything you (or she) would ever want to do, but it's an example of something a diagnosis may affect. 

 

 

I am in a similar situation. So far we have not pursued testing.

 

 
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Ok, now I'll say what you've probably already thought about. If you go to an psych for educational reasons, and you pay for it entirely privately, what you do with those results is YOUR BUSINESS. Just sayin'. It's not like this got stamped on the dc's forehead. The money trail is what makes it spread. Think about what you're going to do with it and where the trail starts and stops. It may not be as wide as you think. You might be able to contain it.

 

Just wanted to chime in - this is true.  Make sure you tell the psych beforehand your intentions, and then they can just give you results on a piece of paper to do with what you wish, without reporting to anyone else.  You can tear it up and throw it away, you can leave it in your desk drawer forever, or you can pull it out down the road when you decide you need it.

 

It's a bit pricey.  But it's worth the piece of mind.

Edited by pkbab5
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Consider the pros and cons. I tend to think a label is helpful for the person to better understand them self and explain to others if necessary.

As far as Asperger vs Autism - I'd let them diagnose Autism and assuming they say it's the same as what used to be called Asperger's then I'd have no problem calling it that.

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For us, having an "official" explaination for behaviors changed the world. DD is able to advocate for herself much easier now that she has a single word to explain herself to her friends and leaders.

"They changed the carpet in church. I have autism. Will you walk me to class so I don't get anxious?"

"I have autism and don't do well in large crowds. Can my mom come with me to regionals?"

"I get really nervous because of my autism. I'll ask you to repeat game instructions at least 3 times, but I'm not being disrespectful, okay?"

The therapies and medical interventions are good too, don't get me wrong, but for us the freedom really came from no longer being a "bad" or "weird" kid. It reframed the way she thought of herself.

Edited by Plink
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In our experience, gathering labels has been only positive. When I finally sat DS down and said, "here's what asperger's syndrome is (we didn't get into DSM semantics with him), what do you think," he all but said, "I have found my people."  It was a good day for him. We later talked about how it isn't asperger's any more, it's called autism spectrum disorder, and there is a WHOLE spectrum and what that looks like, and he's on the very high end of the spectrum...  We discussed pursuing a formal label, and he wanted to do that, so we did. (Which we then ended up a Tourette Syndrome diagnosis instead... the place we went said he didn't qualify for an ASD diagnosis because we homeschool - so he wasn't disruptive to a classroom environment, and now we're on a wait list for a better place, lol.) His ADHD label helps his self-esteem, as it puts him into problem-solving mode instead of self-blame mode. "I know my ADHD makes it hard to stay focused, so I know I need to...." instead of "I'm a terrible person, why can't I get my work done?"

My youngest has many issues, and we find that assigning labels to those issues only helps. It doesn't hurt. The labels open doors that might otherwise be closed. The labels help explain. The labels help narrow down what we need to work on. (For him, even just ruling out labels helps. Well, we know it's probably not X.) The labels help US, his parents. "Ugh, that's really annoying but it's a result of his <insert label here> and (he can't help it/I need to.../he needs...)" is a more helpful internal conversation than "OMG every other 5 year old can do X, why can't he?!?"

 

Speaking for myself, getting the labels "gifted" and "highly intelligent" helped me understand myself and, again, resulted in more positive self-talk. "Oh! I struggle with this because of the way my mind works."

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  • 8 months later...

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