Hi.

[H-Kath]

Hi. I'm new here. I'm in my mid-thirties and working on getting an assessment. This has been frustrating as there aren't many people able to assess adults. The clinic my insurance is likely to cover has a 12 month + waitlist with a list of reasons they'll refuse to assess an adult. I reached out to AANE who did give me a few leads, so hopefully, I'll get answers in the next few months.

I've decided to break the ice here for two reasons. The first and most important is that I want to be in contact with people that have been or are going through this process and deal with similar issues. Regardless of what it turns out to be, stimming is the only thing I've found that actually works to manage my emotions, I've had sensory problems I've never been able to get answers for my entire life, my native language doesn't always work, sometimes I'm mute or have a severely reduced vocabulary when speaking, people make no sense to me, and I'm fixated on the subject I'm pursuing an advanced degree in. If I comment on something it's from the perspective of having similar issues, not an assumption that it's necessarily the same. I just want it understood that my intent is not to claim to have something on my medical record that isn't there.

I have a degree in linguistics and am working on an advanced degree in computational linguistics. I'm primarily interested in spoken dialog systems and how they may be used to assist people in crisis. The second reason for breaking the ice here is that I'd like to get a sense of community needs, attitudes about research, and how viable developing emotional speech recognition for Autistic adults would be.

 

[Autistamatic]

Hi @H-Kath and welcome to the community

 

[Sarah S]

Warm welkome to the forums

 

[Isadoorian]

Welcome to the Forums! I hope you make new friends and enjoy your stay in the process!

Regarding your curiosity about attitudes towards autism research, we get people (Researchers, University Students/post-Grads etc etc) that do surveys semi-frequently, some of which are done quite well while others are done in a rather extremely laughably amateur way, for example one group of Post-Grads from Berkeley University that did a survey a little over a month and a half ago or so posted theirs thinking autism as a disease and that people with autism needed medications for it (which is partly true if the person suffers from any of the co-morbids like Depression or ADHD) rather than seeing autism as a different way of thinking and living life and, never did much research into it prior to beginning their survey at all, which we take quite an offence to naturally.

Many enjoy partaking, others find them almost to be harassing as they strongly feel obligated to participate, which they don't have to do, but make a bit of a big deal out of it anyways.

In short, our attitude towards research surveys in my opinion would be we're mostly fine with them so long as they're done properly and professionally, and the person helming the research and any associates involved actually know what they're talking about.

 

[tree]

 

[Tom]

Hi & welcome. Delays and frustrations getting a diagnosis seems a common theme with many people that have posted here. I wouldn't put much stock in professionals reluctant to diagnose autism in adults. I suspect half the people her were diagnosed (or self diagnosed) as adults.

 

[Nervous Rex]

Welcome @H-Kath. You don't have to wait for a formal diagnosis to start benefitting from this forum. Browse, read, participate, ask - hopefully you can find some answers here.

Come on in, the water's fine.

 

[H-Kath]

Thanks for the warm welcome everyone.

Regarding your curiosity about attitudes towards autism research, we get people (Researchers, University Students/post-Grads etc etc) that do surveys semi-frequently, some of which are done quite well while others are done in a rather extremely laughably amateur way, for example one group of Post-Grads from Berkeley University that did a survey a little over a month and a half ago or so posted theirs thinking autism as a disease and that people with autism needed medications for it (which is partly true if the person suffers from any of the co-morbids like Depression or ADHD) rather than seeing autism as a different way of thinking and living life and, never did much research into it prior to beginning their survey at all, which we take quite an offence to naturally

Wow, I really wish I could say I'm surprised. Do you recall which department? I just read a study about emotional speech recognition where the researchers didn't understand why depression, anxiety, and PTSD shouldn't be regarded as one variable or compared as equivalents. I just can't fathom not doing some basic reading on the subject outside of your expertise first, but it clearly happens.

The only course in my department that touches on respectful interactions with the communities you'd like to study is taught once every two years. There seems to be this assumption that everyone already knows how to do that until something goes wrong. When I showed a documentary to a group of freshmen (mostly international students) about language documentation this was the issue that came up the most often in their responses. The linguists had been doing things like giving cash as a gift without consulting their local contact first. This almost cost them the data. There's at least one Indigenous language in my area that's going to die partially documented because researchers were repeatedly disrespectful and the community ran out of patience for it.

I'm working on getting topic approval right now. As I mentioned before I'm mostly here for personal reasons. If I get approval I'd be seeking advice during the design portion, largely to make sure that I'm respectful and not relying on false assumptions.

 

[Isadoorian]

Thanks for the warm welcome everyone.



Wow, I really wish I could say I'm surprised. Do you recall which department? I just read a study about emotional speech recognition where the researchers didn't understand why depression, anxiety, and PTSD shouldn't be regarded as one variable or compared as equivalents. I just can't fathom not doing some basic reading on the subject outside of your expertise first, but it clearly happens.

The only course in my department that touches on respectful interactions with the communities you'd like to study is taught once every two years. There seems to be this assumption that everyone already knows how to do that until something goes wrong. When I showed a documentary to a group of freshmen (mostly international students) about language documentation this was the issue that came up the most often in their responses. The linguists had been doing things like giving cash as a gift without consulting their local contact first. This almost cost them the data. There's at least one Indigenous language in my area that's going to die partially documented because researchers were repeatedly disrespectful and the community ran out of patience for it.

I'm working on getting topic approval right now. As I mentioned before I'm mostly here for personal reasons. If I get approval I'd be seeking advice during the design portion, largely to make sure that I'm respectful and not relying on false assumptions.

No, they didn't say

You're able to use the Search function to try and find past Surveys as a good starting foundation

One other thing to note as well is many people don't like any mention of ABA Therapy, as they've gone through that and it's caused plenty of trauma for them, it's also frowned upon in general within the general community to boot because of that.

 

[H-Kath]

One other thing to note as well is many people don't like any mention of ABA Therapy, as they've gone through that and it's caused plenty of trauma for them, it's also frowned upon in general within the general community to boot because of that.

I'll keep that in mind and I appreciate the heads up. The only study I've found that tries to address that showed a 50% rate of PTSD in adults that went through ABA vs less than 30% in those that didn't. I've had to stop reading descriptions of it or anything having to do with the doctor that developed it because it's too upsetting.

 

[Major Tom]

Hello, welcome to the forums!

 

[Pats]

Hello H-Kath and welcome. I was diagnosed way late in life. So many times someone here has been stressed over waiting for an official diagnosis. If you can relate to the many traits and feel it describes who you are - no one can know what's going on inside yourself better than you. So if it fits it fits.
I agree with @Isadoorian about the studies - depends on how knowledgeable they are to begin with. As for the PTSD, I would guess it to be higher. I don't know if we are just so deeply affected by things or if we're so gullible we fall prey into the wrong hands often, or a combination of the two, but I would definitely say it's the majority.

 

[clg114]

Welcome to Autism Forums!

 

[H-Kath]

As for the PTSD, I would guess it to be higher. I don't know if we are just so deeply affected by things or if we're so gullible we fall prey into the wrong hands often, or a combination of the two, but I would definitely say it's the majority.

I wouldn't be surprised if that's the case with an accurate sample that includes self-diagnosed people. I did get confirmation from the clinic I spoke with that they are aware that they're underdiagnosing adults. I'll need to reread the study I'm thinking of, but the impression I had was that they'd restricted participants to officially diagnosed people. Then there's the estimate that 50-60% are undiagnosed and unaware.