Seeking a Diagnosis

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Hello Everyone,

I am new to this forum. About a year and a half ago, some of my fellow math graduate students were talking about autism. One student suspected they had it, and the rest of us wondered. We all took the AQ and RAADS-R test, and according to both of these diagnosis tests, I would be diagnosed with autism. Afterwards, I looked at the specific meaning of the numbers in the original papers written about the exams, and saw that even normalizing for the specific career fields (they considered International Math Olympiad students and specific college majors in one), I was still diagnosed. I even looked at the specific p-values and standard deviations in their exam data. The tests both seemed reasonable. The specific criticisms of the questions in the test even matched some of my own.

Since then, I have also been told by a couple of close friends I am autistic. They think I am high functioning, and it has been said in confidence. I also have read some books and tried to learn more on my own. A lot of the experiences shared in these books seem to match my own. I watched the movie, "X+Y", which is about an autistic math student, and I felt like it was close to my experience. I worry that there might be some kind of confirmation bias though. I am not a doctor. None of my friends are. These are not diagnoses.

I haven't gotten a professional diagnosis, and I am hesitant to. I am not sure what benefit this would serve me. I feel worried about the way RFK Junior has talked about making an autism registry. If I get a diagnosis, will my medical information get taken by the government? I also think I am pretty high functioning. Would I get any information or resources from a diagnosis that I can't already get from reading and self advocacy?

What are all of your experiences? Did any of you choose not to seek a diagnosis? Did any of you choose to seek a diagnosis as an adult?

In Connecticut a lot of services are only available to those under 18.
I asked a lady with mental health issues about that when she was a volunteer at a not-for-profit.

Autism is often regarded as a childhood disease so services aren't available to adults.

A diagnoses would have cost me $1500 when I first started participating here.

I've since decided I'm actually transgender as I socialize quite easily presenting female.
Attempting to socialize as a guy doesn't work because I'd fall into the uncanny valley between male and female.

First: I am in the U.S. I don't know how being in another country would affect things.

Second: I was born in 1954. That affected things a lot!

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I got my diagnosis in 2019, shortly before my 65th birthday.

My DSM diagnosis is:

Autism Spectrum Disorder, Level 1 (Mild)
with a note that I also satisfy the criteria previously associated with Asperger's Syndrome which was moved under the Autism Spectrum in 2013. Before that my diagnosis would've been Asperger's Syndrome...except it was not added to the DSM until 1994—before 1994 my only "diagnosis" would've been that people thought I was "weird".

So, I made it to age 40 without a diagnosis because there was no diagnosis that fit me.

By then I'd gone through my school years reasonably successfully. I also was in the military and it paid for me to go to college. I stumbled across computers before the IBM PC pushed PCs into the spotlight and I majored in Computer Science in college. And so my resume looked good and helped me into a good career in computers which I was well into before an Asperger's diagnosis was even possible for me. In fact, I'd retired comfortably in 2011, while I was 56!

Of course, I'd felt "different" since I was about 10! I just didn't know what the difference was.

In 2019 I heard that my then still alive (and very old) Dad had met a little boy whose parents thought the kid might be Autistic...and that kid reminded Dad of me. This motivated my bride and I to read about Autism on the Internet and...much to my surprise...it sounded like me! But the thought that I might be Autistic seemed so odd and unlikely that I found it difficult to believe so I kept looking online until I found AQ.

When AQ indicated I was probably Autistic that convinced me it might possibly be true and it motivated me to get a formal Adult Autism Assessment. Since I was already comfortably retired my motivation for getting the assessment was just that I wanted to know!

If a parent was considering getting an Autism Assessment for their kid I would caution them: might the assessment create problems for the kid? For instance, if I had been diagnosed when I was young I might not have been able to go into the military and therefore not have been able to go to college.

If the kid needs treatment or accommodations (other than everyone thinking they were odd) then they need an assessment. But if they do not need an assessment I think they should consider letting the kid get established for themself before getting an assessment. It would be sad if the assessment killed good opportunities. And, that is my opinion...other Autistics might have opinions different than mine.

P.S. A formal assessment and diagnosis are not required for being on Wrong Planet! The only requirement for being here is a polite interest in the topic.

Welcome to Wrong Planet.

Undiagnosed people are fully accepted here.

Before we can help you find a clinician to diagnose you we need to know the state or city you reside in.

As to the question of if you should get diagnosed there are known benefits and accommodations as well as drawbacks. If the benefits out weigh the drawbacks is a matter of your autism, personalty, and circumstance. We could explain them to you if you request it.

RFK Jr.’s registry is a unwanted and unneeded drawback. Since the registry is just a proposal at this point we do not know how much of a drawback. Also he is reversing gains made against the stigmatization of autism.

If you decide the registry is a deal breaker there is an option I call an unofficial diagnosis. What it entails is going to a professional, having them say in their professional opinion you are autistic but unlike an official diagnoses it does not go in your medical records. Since they do not have to write a diagnostic report this option should be less expensive. The drawback is you are not eligible for benefits and accommodations that a disability diagnosis entitles you to.

I appreciate all of your responses!

I think I may look into an unofficial diagnosis. I am currently spending a semester working at a research lab, so I will wait to book an appointment until I get back to my home state. I should have access to some help through my university. If they are unable to help there, I trust them to recommend someone near me.

The access to accommodations may be helpful, but I feel like I am capable of navigating most things in daily life. An unofficial diagnosis may help me know more about myself without having to go through the expensive process of an official diagnosis.

In the meantime, I will keep looking around this website. I am curious to learn more about everyone's experiences with autism. It seems like a lot of people with autism have some shared experiences, even though nobody has the exact same experience (many of the things listed here, such as sensory sensitivity resonate with me for example). I think seeing how people find accommodations will be helpful.

You don’t necessarily need a formal diagnosis if you’re already finding resources and self-understanding helpful. Many people live fine with self-identification. A diagnosis is more useful if you need accommodations or medical documentation.

WP has members from a number of countries so I did not want to assume you were from the U.S....until I saw this post.

In the U.S. you can search for someone to do an Adult Autism Assessment at https://www.findapsychologist.org/. But the search is not direct! That link can help you find licensed psychologists in your area and learn a little about them.

For instance: Do they work with Autism?
For instance:-Do they work with adults your age?

But, I have not seen any listings for psychologists in my area that say they do Adult Autism Assessments! I'm guessing most new Autism patients are children so the psychologists do not want to waste space in their listing talking about it.

When I was looking for someone to do my assessment I looked for psychologists in my area, who worked with Autism, and worked with patients my age. That thinned things down a lot. The next step was to call those practices until I found one that would assess me. And, when I called, I discovered that whoever answered the call ^{office staff} might not know if they do assessments...when I called a practice near me (that worked with Autism and with people my age) the person who answered the phone did not believe they did assessments but said, nonetheless, that they would check. Of course, that is the practice that assessed me!

A couple of ways to possibly save money:

1. Apparently part of the assessment is often doing an IQ test. When I spoke to the practice that did my assessment they quickly concluded there was no need to give me an IQ test and dropping that saved quite a bit of money.

2. Check with your insurance company and see if they will help with the cost. And be very careful to find out what their process is so that they will help cover it.
Hint: They might want you to use one of their in-network providers. I goofed on that and that cost me money.

Good luck!

Oh...and before you get a formal assessment make sure an Autism diagnosis will not hurt you!

For instance, someone considering joining the U.S. military could find that an Autism diagnosis is a big problem. There could be other reasons that a diagnosis could be a problem, too...even though I don't know what those reasons might be.

I recommend that before you get an Adult Autism Assessment you ensure an Autism diagnosis would not harm you. However, if you are looking for formal treatment then a formal diagnosis would probably be obligatory.

I was 64 and happily retired before I got my assessment. The assessment was fun. And the biggest problem I have is I can't get my normal medical providers to adjust their approach to accommodate my Autism (for instance, put it in writing and make it very clear).