Should I get a professional assessment?

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mathyoo
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20 Nov 2023, 11:05 am

I'm turning 58 in a few weeks, and while I've known that I'm deeply introverted for a very long time, I began to suspect that I could have autism a few years ago, but didn't think much about it into very recently, when some particular communication issues with my wife came up. During our conversations about how we could communicate better, I realized that there's much more to my communication issues, introversion, mental health, etc. than just being deeply introverted. So I took some online evaluations like the Aspie Test (95% probability that I have Autism) and the Autism Spectrum Quotient (score of 38 out of 50). All of the other tests I've taken show a strong indication that I'm autistic, as well. I've been watching videos by some YouTube autistic vloggers about their experiences, and they resonate strongly with me.

The upshot is that I'm pretty convinced that I'm autistic, but my literal/specific brain wants a definitive answer. So what would a clinical diagnosis give me that self-diagnosis would not? My current plan is to accept that I do have autism and work with my therapist, learn more about autism and how to navigate the world with that in mind, and approach my marriage and communication with my wife from that new perspective. So how would an official diagnosis benefit me? I'm not sure how much of an autism assessment my insurance would cover, and I can't really afford paying thousands of dollars out of pocket for the assessment.



NobodyNothingJr
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20 Nov 2023, 11:17 am

I personally went for a professional assessment because I’ve been unable to hold down employment for the past 22 years. I need assistance and accommodation at work and you can’t ask for those things without an official diagnosis.

It’s really a personal choice. I likely wouldn’t seek a professional assessment if I didn’t need help but that’s just me. It’s really whatever feels right for you but if you need accommodations of any kind an assessment is usually required.

Most insurance will not cover this type of assessment for adults. I paid out of pocket for mine and it was like $500 USD or so.



DanielW
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20 Nov 2023, 11:44 am

Unless you need workplace accommodation, or you really need to know for your own peace of mind and you have the money to spare I wouldn't recommend a formal diagnosis. While I do appreciate actually knowing, my own assessment has not been worth the time or the money and I would not go back and do the same again. (I paid close to $2,000 for the office visits and the cost of testing itself)



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20 Nov 2023, 1:09 pm

I agree with the others who have responded. Unless required by the government, getting a "professional" assessment offers little value. You might consider what is available on the Internet. The Tony Attwood videos on Youtube can be helpful. Also here is a free pdf booklet that may be interesting;

Aspergers, An Intentional Life

https://christianpioneer.com/blogarchie ... e_2017.pdf



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20 Nov 2023, 3:17 pm

Where I live assistance is only available to children. Adults are on their own.
So there is very little benefit to getting a diagnosis where I live.

There was a place that would help adults called Roses for Autism. A little business where folks on the spectrum could get job training. They did not require an official diagnosis.



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20 Nov 2023, 3:48 pm

mathyoo wrote:
The upshot is that I'm pretty convinced that I'm autistic, but my literal/specific brain wants a definitive answer. So what would a clinical diagnosis give me that self-diagnosis would not?

I sounds like you are following a similar trajectory to the one I followed:
Pretty sure not Autistic but external stimulus suggests I look into it
When I read about Autism on the Internet, it sounds like me
When my wife reads about Autism on the Internet, it sounds like me
I take the AQ test and it says I have significant Autistic traits (Autism)
My bride takes the AQ test for me, answering as she thinks I should, same result

After that I thought it quite likely I was Autistic but I knew I didn't have a formal diagnosis. I wanted to be sure. And when I told people I didn't want to feel like I should qualify that it was a self-assessment.

I checked with my health insurance and they said an assessment would be covered. (They did not know what was required for an assessment, however. That delayed things a few months. It turns out all it required was a licensed Psychologist who would do the assessment.) In the confusion due to my insurance folk not knowing what was needed I went off-network when getting a psychologist.

My insurance still covered about half the cost of the assessment.

But I almost didn't find that out. I was so happy with the diagnosis I almost didn't bother submitting it to insurance for reimbursement!

P.S. I got my assessment when I was 64. I'd already been comfortably retired for a few years. I did not need treatment and I did not need formal accommodations. (Though I am trying to use the diagnosis to persuade my other medical providers to give me stuff in writing. I am not too successful with this, however.)

I just wanted to know.

P.P.S. Though now when my bride bumps up against one of my Autism traits I can say:

I have a doctor's note for that! :D


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mathyoo
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21 Nov 2023, 9:48 am

Thanks for all the replies. I think I'm going to hold off on the assessment for now. Along with the tests I've taken online, I just connect so much with the videos and blogs I've read from other people with adult diagnosed autism that I'm convinced that I'm autistic. I think that my want to know is purely because my autistic brain insists on evidence, and absolute evidence if it's available, to accept things without questioning them any further.



BTDT
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21 Nov 2023, 10:32 am

Autism commonly runs in families. Someone, perhaps younger, being diagnosed with autism would be a sign that you have autism. Many women get diagnosed when their kids are diagnosed. It is harder for women to be diagnosed.



mathyoo
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21 Nov 2023, 10:42 am

No one in my family has been diagnosed with autism, but I've been thinking about it a lot, and I think there's a really good chance my mother is autistic, and I have a nephew who's almost certainly autistic.



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21 Nov 2023, 12:00 pm

In my case an official diagnosis would have been a step back!

I found that most of my socialization difficulties were due to me being transgender and falling into the uncanny valley between male and female! I'm short and petite with an hourglass figure so folks would think that I'm a girl faking it!
Not many guys look as convincingly female as I do.

But, if I wear female clothes my mannerisms and voice match my appearance!
Much easier to socialize as a female!

You may find it helpful to monitor this forum for hints on how to deal with autism.



DanielW
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21 Nov 2023, 3:02 pm

mathyoo wrote:
No one in my family has been diagnosed with autism, but I've been thinking about it a lot, and I think there's a really good chance my mother is autistic, and I have a nephew who's almost certainly autistic.


While there is a genetic component, no one in my immediate family on my mother's side has anything like autism. Its the same on my father's side, but when you combine the two families it turns out that I and my brother are both on the spectrum.



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24 Nov 2023, 6:24 am

I luckily don't have to deal with health insurance-related problems in my country because I can choose to get an assessment via public healthcare or private without much fuss, but as for myself, I want an assessment so I can finally get some piece of mind because it's been nagging at me since I was 17 and I'm 35, and I want to finally put that to rest.

But I also need mental healthcare support and after figuring out it's most likely the autism that's the source of my unhealth, I just want to not feel like I am alone with dealing with it anymore. I am overall well-functioning, I can live by myself and I have a full-time job, but man is it hard at times. Like, Really. Hard. And I'm tired of having to live like that. I probably don't need a disability plan/accommodation, but professional help from a licensed psychologist who has experience from working with adult autistics to help them deal with the shortcomings of their disability would be massively helpful, because I know I can't figure all of this out by myself. I am "only" 35 and if my life is going to keep being full of these bad days, I sometimes wonder how I'll be able to retire when I'm 67.

If you don't need any health-related support or accommodations, I don't see why a diagnosis would be necessary beyond "I can finally say I was right".



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25 Nov 2023, 9:26 pm

Sometimes it might be preferable to not make it official.


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IsabellaLinton
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25 Nov 2023, 10:37 pm

BTDT wrote:
Autism commonly runs in families. Someone, perhaps younger, being diagnosed with autism would be a sign that you have autism. Many women get diagnosed when their kids are diagnosed. It is harder for women to be diagnosed.


I went for assessment at age 50, because I reflected on my parents and realised they were likely on the spectrum. My dad in particular and his dad, fit the criteria perfectly. My older brother and my son also seemed to be autistic but I was thinking more about my parents than my kids.

I had no problem being diagnosed despite being a woman, and being the first person in my family to go for assessment. It was very obvious to my assessor who put me at Level 2.

It was because of me that my daughter (around 20 at the time) then decided to go. She was dx HFA.

My son considers himself autistic but he can't afford an assessment.

As for the OP's question - I agree with others that it's a personal decision. There are pros and cons of making it official, and not the least of the cons is expense. Mine was around $2500 if I remember correctly. I got $1500 covered on Psychology insurance but that meant I had to forgo a year of sessions with my trauma therapist to have those funds available.

Another drawback is that it's harder for people to get life insurance after being dx. My daughter was denied it, and she wants it because she has chronic medical conditions. I already had life insurance before being diagnosed.

I guess the rationale is that statistically, we have a shorter life expectancy and are at greater risk of suicide.

* I'm not saying that's logical, but it seems to be how it works.

I advise people to get life insurance if they want it, before going for a diagnosis.


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25 Nov 2023, 10:58 pm

If you think it will help you, go for it.


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26 Nov 2023, 4:58 am

Welcome to Wrong Planet.

For now, you seem to have made the right choice for you. If you have not done so yet let your therapist know what you have told us and let us know the therapist's reaction.

In Colorado, autism will not be a barrier to keeping your driver's license.


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