Is a formal diagnosis worth the price?

Page 1 of 1 [ 6 posts ] 

lambdamoses
Hummingbird
Hummingbird

User avatar

Joined: 19 Feb 2018
Age: 29
Gender: Female
Posts: 22

19 Feb 2018, 4:50 am

First of all, hello from a new member of this site. I'm debating whether I should get a formal diagnosis because of the cost. I've been suspecting mild ASD (or Asperger's; though it's not in DSM 5, I still like this word) since 2016. I've taken the AQ test (got 38), RAADS-R (took it a few times, around 157), and the Aspie test (117 Aspie, 92 NT), as well as some tests on recognition of facial expressions (I really hate the mind in the eyes one for it's so hard; I got something like better than 1 out of 10 people for some tests and 0 out of 10 for some), so I suppose they point to Asperger's but I might have just been over reporting. I've seen a few threads on this forum about diagnosis. From those threads, it seems that a formal diagnosis costs at least $1000 in the US.

I had lots of trouble before college, likely due to Asperger's, such as getting bullied so much that I cried every day, not having friends most of the time (I never talked to other kids in kindergarten and I must wait for people to come to me or to be introduced by someone else in order to make friends since I don't initiate small talk by default), getting so obsessed with weird stuff that I talked about it all the time and that sometimes I wouldn't do my homework. Back in middle school, I was so obsessed with computer science that I skipped homework for all other classes to learn C programming; my parents told me that some of my teachers lost hope in me because of that but my parents brought back hope by networking with the teachers (it's a really long story since I didn't grow up in the US, not getting into too much details here). A special interest almost bombed my college application back in high school (in more detail, I was obsessed with law back in the junior and senior years of high school. I spent so much time reading case laws that I neglected homework from my A-Level further maths and art classes, the classes with the most homework, so as a result, I got a D for art and C for applied math in the first semester of my senior year though I usually get straight A's, and I wanted to apply for elite schools like MIT. Then my parents used a bit of networking with the principle to remove that D from my transcript, but that C got me tons of rejection letters. But anyway, I still got into UCLA.)

Since that semester, I realized that there are important things that I should take seriously whether I like it or not, so in college, I managed to control my obsessions (like by relating required tasks I don't like to my special interest and promising myself to do my special interest only after doing the unpleasant required tasks; my parents used the latter a lot to keep me on track when I was in middle school). Also in college, I realized that not everyone is interested in my passion (my mom has told me a zillion times not to talk about the same topic all the time after all), so I could talk more normally (though it meant I almost never talked to my roommate whenever I got a roommate who didn't share my interests). I developed a protocol of questions to ask in small talks by memorizing what others asked me and what social people said to each other, so I can do some small talk, though usually not very well after I run out of protocol questions. I also made a few nerdy friends who share my passions. I don't have a lot of trouble with sensory issues in my current environment (it's easy to avoid foods with bad texture since my parents aren't here to force me eat those foods, my roommate and colleagues don't use perfume or air freshener, not partying is fine, and there aren't motorcycles in the middle of campus). Now I'm in graduate school; though I still have trouble socializing with my colleagues (people don't talk about work all the time after all), at least my PI (principle investigator, which is basically the boss of a lab) likes me and two friends have come to me (though I still have trouble deepening the friendship beyond talking about nerdy stuff and doing homework together). My university's counseling center has a free social skills group and I'm attending it, trying to prevent social skills from getting in the way of research collaborations (to be honest, I gave up several dream jobs because of their social skill requirements, but eventually I found that there's no escape from socializing so I have to improve social skills); it's designed for social anxiety, but it still kind of helped since I did develop social anxiety, not sure when, maybe sometime in high school or college, maybe in my first lab in college back in the sophomore year.

That's my story. It seems that some Aspies like reading stories of other Aspies. To be honest, I kind of doubt whether I'm really an Aspie; after all, I can laugh and cry (though I have a monotone voice and tend to talk really fast regardless of the language I speak and I generally don't gesture when talking), routine isn't my thing (if you mean sticking to a schedule, though I tend to sit in the same spot and order the same food in restaurants) and my room is a horrible mess with a pile of trash in a corner, I like traveling (almost always alone, since I don't have anyone close enough to travel with me), and I'm braver than most neurotypicals when traveling alone (though I always plan my trips very carefully, memorize routes to take, and carefully design plan B before I depart). I do have a sense of humor, though only nerds understand my jokes. Also, it was said that Aspies tend to have poor executive function, but I'm pretty good at planning experiments and trips. However, almost nobody has all the traits on DSM 5 and every Aspie is unique, so I don't know if these can rule out Asperger's.

So in sum, I think I'm mostly fine now and I don't really need support that costs more than $1000. I still struggle socially, but I'm getting better and I don't think it takes $1000 to improve social skills. I would rather use $1000 on my special interests (which are now computational biology with an emphasis on R programming, and the science and religion dialogue with an emphasis on the philosophy of computational and systems biology). I'm debating whether I should get a formal diagnosis. It's really more about getting an explanation for my quirks and getting a community of people with similar concerns than getting support, since I managed to solve most of the problems on my own. To some extent, it's also a preparation in case my future kids are Aspies. For now, I'm more inclined not to get a formal diagnosis and continue to blend in unless I'm really in trouble despite my efforts to blend in or my future kids are Aspies.

Thank you for reading so far. My questions for you are:

1. If you have been diagnosed with Asperger's or high functioning ASD as an adult in the US, what motivated you to pay so much to get the diagnosis? Feel free to share your story; I'm not bothered by too much details.

2.
# Oh, for non-programmers, "&&" means "and", and "||" means "or",
# and what's inside the parentheses should be evaluated first, just like in R;
# I just find it easier to express this in pseudocode.
a = you have read my story
# If you haven't, it's fine, just skip this question.
b = you have a formal diagnosis of Asperger's or ASD
b1 = you are an expert in Asperger's or ASD
if (a && (b || b1))
Do you think Asperger's is the right explanation for my quirks?

3. Where to get a formal diagnosis for adults in Los Angeles?

4. If your employer accommodates for your Asperger's syndrome or ASD, then what's your occupation, and what are the accommodations like? What I'm the most worried about are office politics and collaboration.

I apologize if I said something inappropriate. For Americans, happy President's Day!



ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,252
Location: Long Island, New York

19 Feb 2018, 11:48 am

Your university probably has a department for students with disabilities. The first step I would do is ask them for recommendations. The might do assesments on campus.

You can join the local chapter of GRASP. They run support groups. I am sure they have one in a big city such a LA.. Members might point you in the right direction.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


AspieUtah
Veteran
Veteran

User avatar

Joined: 20 Jun 2014
Age: 61
Gender: Male
Posts: 6,118
Location: Brigham City, Utah

19 Feb 2018, 12:19 pm

1. I pursued a diagnosis of ASD because I did a lot of reading of research, screening tests and textbooks. Like you, I listed all my behaviors, characteristics and comorbids so I could share them with my diagnosticians. At my first assessment (with a private practitioner), I was diagnosed with GAD and OCPD, but not ASD. A year and a half later, I was diagnosed with ASD at my university. So, it appears that you have vast knowledge about yourself. Have you completed any screening tests? As ASPartOfMe mentioned, large universities near you would likely have autism clinics where clinic staffers might be able to reduce the cost (they call it a scholarship). Private practitioners are more affordable, but might not always understand how to determine ASD in adults or females. Armed with as much information as you have, you should be able to become your own best advocate at a clinic or without one.

2. Love the personalized coding!

3. Call some large universities near you and ask if their hospitals and clinics offer an ASD clinic for diagnosis. Make a short list of the top three which are afffordable, nearby, and has been trained in diagnosing adults and/or females.

4. I was diagnosed with ASD years after I was already awarded Social Security SSI diability benefits, so I wouldn't know about coworkers and workplace experiences. Having contacted a few former coworkers, they have all said that they noticed some autistic behaviors, but neither asked about them nor cared too much as they would have accommodated me, anyway.


_________________
Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


kraftiekortie
Veteran
Veteran

Joined: 4 Feb 2014
Gender: Male
Posts: 87,510
Location: Queens, NYC

19 Feb 2018, 12:27 pm

Sometimes, there are people who are doing research in Autism Spectrum Disorders who need subjects. Frequently, these subjects are given the diagnostic tests for free.

If administered by a licensed psychologist or psychiatrist, the diagnosis resulting would, seemingly, be official. It depends upon what the psychologist/psychiatrist thinks.



lambdamoses
Hummingbird
Hummingbird

User avatar

Joined: 19 Feb 2018
Age: 29
Gender: Female
Posts: 22

19 Feb 2018, 7:23 pm

Back in 2016, I talked to a Master's student in psychology who was an intern in the counseling center since the counseling center assigned her to me, and I gave her a list of my quirks possibly related to Asperger's. She took out DSM 5 and said my list suggests ASD, though she's not very knowledgeable about ASD. She contacted some facilities in LA that may do adult ASD diagnosis, but I never heard back. Since then, I just tried harder to be NT. Back in 2016, I was still an undergrad, and had a really nice postdoc who not only mentored me in research but also did most of the socialization for me. My PI at that time was one of the most social people I've ever met, and he also did some of the socialization. Then I almost believed that I no longer had social problems and that I was just a hypochondriac when suspecting Asperger's, until nobody socializes for me any more in graduate school. Anyway, my case isn't that severe compared to the cases of many people on this website and probably I can deal with it on my own without a diagnosis. Better reserve the resources for more severe cases.



ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,252
Location: Long Island, New York

20 Feb 2018, 2:06 am

A diagnosis might help make it less difficult to deal with it.

If things turn bad, you burn out from trying to fit in or just run into a streak of bad luck having a diagnosis means you do not first have to start the process when desperate.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman