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51 and wondering about getting an official diagnosis

P

pek73

New Member
Hello,
I am 51. I had been struggling for some time with depression and decided to spend 2024 addressing it full force. this led to my therapist asking me in November if I was ever screened for Autism as a child. I had not and was a little surprised. she gave me a link to the raads-r test and I scored very high. I wasn't convinced so I looked up other tests and took the cat-q, aq and aspie tests and they all came back the same. I'll be honest it set me back a little as this was not on my radar. while it does explain a lot and I still have reservations claiming to be autistic since I do not have an official diagnosis. It feels inappropriate to say I am something when the results are not from a licensed Physiatrist. It also feels weird to say I am screened for a believe I am to someone, like I am trying to explain away a socially awkward or inappropriate reaction or comment. It also cost a lot so I am on the fence and looking for others experiences. any input is good input, thanks
 
I am in a similar situation...

Apparently getting a diagnose for autism as an adult is a very hard thing to do, unless you have a documented history of the childhood... or at least that is what my doctor told me...

Some people here had got the diagnosis as an adult, and then again, documentation seems to be the key. They keep a log of daily events that end up showing a picture of autism. I think this kind of log is a good idea, even if you don't plan on getting a diagnosis... having this evidence of autism affecting every day of your life maybe show you that you are autistic?

Another thing that have being helpful to me is to see if there is a link between autism and the things that I do that are different from the normal people... for example, in my case there is a link between autism and left handed, there is a link between autism and illness anxiety disorder, there is a link between autism and poor motor skills, there is a link between autism and loneliness... and so on... so in my case, autism would just take all the things that are not really normal about me and put them all in a nice little label.

At the end of the day, a formal diagnosis is a paper that you can use to access certain benefits but also can potentially cost you some rights. So I see it more like an strategic move, what you win, what you lose and if that trade makes sense to you in your situation.
 
Asperger's (now listed under autism) had been suspected by multiple family members and by myself while I was still a child, but I didn't actually get evaluated for it until about 2 -3 years ago.
 
I am thinking this is how most adults start their journey. The suspicion, the online tests, and then either "self-diagnose" and let it be, or seek a professional diagnosis. If you are 51, like I was when I was diagnosed, you probably don't "need" a professional to tell you what you probably already know, and you are most likely not seeking assistance or disability. On the other hand, I found my professional diagnosis quite helpful because of all the testing that was performed to come up with it. I learned a lot about myself. I spent about 90 minutes in a performance lab with 2 people, then another 90 minutes with the psychologist doing more testing and interviewing, then another 90 minutes doing the written testing. It was a long morning. My wife went with me, and she was interviewed, as well, in an attempt to establish some sort of history of behavior.

From there, it was deep dive into "all things autism" in terms of the medical literature. Several years later, still learning.

Some folks are willing to accept their self-diagnosis. Other folks still wonder if they are "imposters". Some folks in certain countries struggle with the money and wait it takes to get a diagnosis. In the US, you can get a diagnosis relatively quickly, within a few months, if you are willing to pay out-of-pocket costs. Insurance companies in the US pretty much eliminate all their mental health coverage at 18 years of age. Having said that, talk with the billing department, as they knew the correct billing codes and I was able to get a significant discount.
 
717 said:
I am in a similar situation...

Apparently getting a diagnose for autism as an adult is a very hard thing to do, unless you have a documented history of the childhood... or at least that is what my doctor told me...

Some people here had got the diagnosis as an adult, and then again, documentation seems to be the key. They keep a log of daily events that end up showing a picture of autism. I think this kind of log is a good idea, even if you don't plan on getting a diagnosis... having this evidence of autism affecting every day of your life maybe show you that you are autistic?

Another thing that have being helpful to me is to see if there is a link between autism and the things that I do that are different from the normal people... for example, in my case there is a link between autism and left handed, there is a link between autism and illness anxiety disorder, there is a link between autism and poor motor skills, there is a link between autism and loneliness... and so on... so in my case, autism would just take all the things that are not really normal about me and put them all in a nice little label.

At the end of the day, a formal diagnosis is a paper that you can use to access certain benefits but also can potentially cost you some rights. So I see it more like an strategic move, what you win, what you lose and if that trade makes sense to you in your situation.
Click to expand...
Thank you for this. what type of rights may be lost?
 
pek73 said:
Thank you for this. what type of rights may be lost?
Click to expand...
It depends on where you are, and also on when you are... as laws change from place to place and also over time.

But you are looking at no being able to access some jobs, for example in US there is a barrier to military jobs, and in general to all security related jobs as they all follow military culture and model.

There are also, potentially, more legal requirements for autistic people, when it comes to things like adopting, owning guns, driving, voting... and so on... is always the same deal... we do not discriminate but we have some extra paperwork for you...

Do you know that they can pay you less money for the same job if you have autism? depending on location...
 
Hello and welcome, @pek73, hopefully we can help point you in the right direction.

There is an overlap with depression and autism. Some people find themselves getting nowhere with treating their depression because they don’t discover the root cause: autism.

pek73 said:
while it does explain a lot and I still have reservations claiming to be autistic since I do not have an official diagnosis. It feels inappropriate to say I am something when the results are not from a licensed Physiatrist.
Click to expand...
I thought exactly the same thing when I first discovered the term autism. So many things suddenly made sense, yet it didn’t feel quite right to use the term. It took me 12 years from discovering the term to seeking a diagnosis. A touch of imposter syndrome.

Here is a link to an overview of imposter syndrome with regards to autism. Maybe some of it will resonate with you:

Autistic Imposter Syndrome: Why it’s Normal

pek73 said:
It also feels weird to say I am screened for a believe I am to someone, like I am trying to explain away a socially awkward or inappropriate reaction or comment.
Click to expand...
This is also a very common thought, people questioning themselves about whether they are just “looking for an excuse” to “explain away” their genuine struggles. This is false, your struggles are valid and worthy of being fully addressed.

I found getting an official diagnosis to be incredibly helpful in ways I never imagined. I only really wanted a diagnosis for my medical records, but the clinic pinpointed all my strengths as well as my weaknesses. But getting a good clinic took months of research. I could have easily paid a lot of money for a sheet of paper that said “you are autistic.”

But a lot of people on here get by without a diagnosis. They teach themselves. With or without a diagnosis, autism still requires a lot of self-teaching. Here is the page that started my official diagnosis journey, it may help you. Some of it won’t apply since it is country specific, but the rest applies to autism no matter where you are in the world:

https://www.nhsinform.scot/illnesse...and-spinal-cord/autism-spectrum-disorder-asd/

All the best on your autism journey.
 
Welcome. I figured out I was autistic in my mid-60s. I’m 71 now and have learned how much of my life now makes more sense. I have no need nor interest in a formal diagnosis.
 
pek73 said:
Hello,
I am 51. I had been struggling for some time with depression and decided to spend 2024 addressing it full force. this led to my therapist asking me in November if I was ever screened for Autism as a child. I had not and was a little surprised. she gave me a link to the raads-r test and I scored very high. I wasn't convinced so I looked up other tests and took the cat-q, aq and aspie tests and they all came back the same. I'll be honest it set me back a little as this was not on my radar. while it does explain a lot and I still have reservations claiming to be autistic since I do not have an official diagnosis. It feels inappropriate to say I am something when the results are not from a licensed Physiatrist. It also feels weird to say I am screened for a believe I am to someone, like I am trying to explain away a socially awkward or inappropriate reaction or comment. It also cost a lot so I am on the fence and looking for others experiences. any input is good input, thanks
Click to expand...

Hello. I was surprised at how I scored on the tests and I was shocked when the neuropsychologist tested and diagnosed me. I did not know what autism was, I had just heard of it. Strange word to me. Then I had a diagnosis and it said I had it. It scared me because I did not know what it was. When I learned more and met other autistic people I felt much better.

I hope you can get tested if you want to. I do not know how a physiatrist would be part of that testing.
 
I've had anxiety disorder and depressive episodes since age 13. I knew my personality was what people called quirky.
I didn't know about autism until my mom's death, and I was working with a grief counselor who thought I had many traits of Asperger's. She suggested a psychologist that specialized in autism.

Thankfully my insurance did cover the cost of testing. I was mid-fifties when I was diagnosed. I'm glad I did it as it explained a lot about my life. Then I found this forum and I learned a lot more.

Good luck on your journey and decisions. And Welcome here!
 
Yes worked for me, understanding yourself, is more important than any thing else. Spent my sleeping time discussing philosophy with myself, even through I have no real interest in it. My female cat woke me up and here I sit. hoping to get tired enough to go back to bed.
 
717 said:
It depends on where you are, and also on when you are... as laws change from place to place and also over time.

But you are looking at no being able to access some jobs, for example in US there is a barrier to military jobs, and in general to all security related jobs as they all follow military culture and model.

There are also, potentially, more legal requirements for autistic people, when it comes to things like adopting, owning guns, driving, voting... and so on... is always the same deal... we do not discriminate but we have some extra paperwork for you...

Do you know that they can pay you less money for the same job if you have autism? depending on location...
Click to expand...
Thank you for the info. I am in the US and was aware of the military thing but at 51 I doubt that will come up. the other stuff is interesting and I will do some research. with or without a diagnosis I don't plan on telling work and I think the HIPA laws protect me from having to disclose anything even if asked. I really appreciate the help
 
grommet said:
Hello. I was surprised at how I scored on the tests and I was shocked when the neuropsychologist tested and diagnosed me. I did not know what autism was, I had just heard of it. Strange word to me. Then I had a diagnosis and it said I had it. It scared me because I did not know what it was. When I learned more and met other autistic people I felt much better.

I hope you can get tested if you want to. I do not know how a physiatrist would be part of that testing.
Click to expand...
meant psychologist, psychiatrist in my area you need one of these. a regular doctor or therapist can make it formal. the process seems over the top since many other conditions (some that involve heavy drugs and treatments) are diagnosed with very little input on one persons input. I really appreciate your input
 
pek73 said:
Thank you for the info. I am in the US and was aware of the military thing but at 51 I doubt that will come up. the other stuff is interesting and I will do some research. with or without a diagnosis I don't plan on telling work and I think the HIPA laws protect me from having to disclose anything even if asked. I really appreciate the help
Click to expand...
In the US:
1. Driving: No legal bar based upon autism alone; restrictions depend upon functional impairments, with potential for discriminatory overreach if not individualized.
2. Gun ownership: Not restricted by autism alone; restrictions depend upon functional impairments, with potential for discriminatory overreach if not individualized.
3. Voting: Unaffected by autism; any restriction would violate federal law.
4. Military Jobs: Largely restricted due to DoD policy, with rare waivers; potential discrimination exists but is legally permissible.
5. Police Jobs: No universal ban, but diagnosis may lead to rejection, especially for specialized roles; discrimination is possible and actionable under the ADA.

The decision to disclose an autism diagnosis is specific to your perspective and context. It is highly individualized. Personally, some folks know, some do not.

If you are one that is seeking accommodations at work, or any other potential protections under the ADA, then you will need the official diagnosis from your physician to present to Human Resources. If you are involved with the criminal justice system for whatever reason, you will also need to present your paperwork.

Otherwise, my bias would be, for your own knowledge and peace of mind, to obtain an official diagnosis time and money permitting.
 
Neonatal RRT said:
In the US:
1. Driving: No legal bar based upon autism alone; restrictions depend upon functional impairments, with potential for discriminatory overreach if not individualized.
2. Gun ownership: Not restricted by autism alone; restrictions depend upon functional impairments, with potential for discriminatory overreach if not individualized.
3. Voting: Unaffected by autism; any restriction would violate federal law.
4. Military Jobs: Largely restricted due to DoD policy, with rare waivers; potential discrimination exists but is legally permissible.
5. Police Jobs: No universal ban, but diagnosis may lead to rejection, especially for specialized roles; discrimination is possible and actionable under the ADA.

The decision to disclose an autism diagnosis is specific to your perspective and context. It is highly individualized. Personally, some folks know, some do not.

If you are one that is seeking accommodations at work, or any other potential protections under the ADA, then you will need the official diagnosis from your physician to present to Human Resources. If you are involved with the criminal justice system for whatever reason, you will also need to present your paperwork.

Otherwise, my bias would be, for your own knowledge and peace of mind, to obtain an official diagnosis time and money permitting.
Click to expand...
thank you for this information and your input it is very helpful. I am leaning towards peace of mind as it is bothering me, feeling lost. I have no need at this time for protection or assistance. up until now I have worked through and masked enough to have a fairly successful career and home life. at this point I think it has finally caught up with me after some significant medical issues between 2015-2017 and the uncertainty that followed. Internally it was like a series of dominos falling and mentally keeping up and handling all of it led to depression. which eventually led to discovery. If I had to do it again I wish I would have gone into the hospital knowing and telling the staff that I was autistic and had certain things that were going to be traumatizing if they weren't presented and handled differently. thank you for your help
 
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