PDD-NOS case looking for neurological examination

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I'm in my mid 20's, and I was diagnosed with PDD-NOS around when I turned 18. I'm currently in the progress of "recovery" from this variant, which is something that's apparently been well-documented (including a case with one of my previous therapists)- I understand that's debatable for many people here, but I believe it.

I came to realize sometime ago that I will not recover through any sort of therapy or treatment, but my own self-actualization. I don't know exactly how that will play out, but much of it will come from understanding how, exactly, I've developed as I did.

Until that occurs, I believe what my best option is finding someone- a researcher, a research group, an institute- where I could potentially undergo neurological examination (such as MRI) that would examine the nature of my brain structure and processes in relation to how it is affected by PDD-NOS, especially with regards to IQ, as I feel my cognitive profile has been uniquely effected in that regard. I am not interested in further neuropsych evaluation, as I have undergone it multiple times in the past and it hasn't told me much in the long run. I think my case is significant enough that I could function as potential case study and make genuine contributions to research. PDD-NOS is to this day an uncommon, poorly understood condition even in face of the immense amount of research conducted on ASD, and is especially of interest with how it carries with it an amenability to "recovery" unlike other forms. I feel like I have much to offer from a clinical and research perspective with this, and as a way of understanding and improving myself with regards to it.

I posted similar things on this forum over six years ago here: viewtopic.php?t=187746

Things have not changed much. I had a poorer picture of how things are 6 years ago, of course, but the attempts I've made over time (I didn't really start making serious efforts until mid-2015) haven't amounted to much. I have contacted prominent autism researchers- Margaret Bauman, Gene Blatt, one of the people who carried out Temple Grandin's case study- and nothing. Absolutely nothing. Even less prominent researchers, including a neurologist at a major hospital near me- have basically told me they have no real idea of who can help. They have at times given me further references, but it hasn't been much to go on. And while I still have people and groups to look up (including the Cleveland Clinic), I'm not hopeful of anything.

I haven't tried much of anything since December, and I really don't know what else to say or do at this point. I have tried so hard, for years now to get something like this put together. I am someone with a rare variant of ASD that is effected by it in a unique way- I have no doubt in my mind proper analysis would reveal remarkable things about my condition and could present great research opportunities, among other things. So why is it apparently so impossibly hard to get anything in the slightest capacity started on this? Why do I keep having to endlessly fish around for researchers and professors to offer me something only to tell me there's nothing they know of? I have tried being apart of clinical studies, but they've all variously turned out to be very difficult to carry on with long-term, and none of them would actually offer me anything direct other than MRI scans I could present to others. I remember way back in 2005 seeing a documentary on children/teens with genius level intelligence being identified as having significantly slower rates of glucose metabolization in their brains- this was obviously apart of a study, but this is a correlate of high intelligence I believe has been documented to have gone back as far as about the early 90's. There is a wealth of information now on the neurology of intelligence- I understand that going for autism researchers is the best avenue, but I really believe there is more than enough information accumulated out there to get an understanding of my brain structure.

So why is this so hard? Why have I constantly run into dead ends and run-arounds and people who seem to he absolutely no clue of anyone or any group/institute that might have something to offer? This really doesn't seem like it should be this difficult or esoteric to find something. And I really don't see much of an opportunity for myself beyond this. My college education is nothing special, and I might have to go back to school, which I loathe the possibility of. I've done little this year with looking into these prospects further owing to a medical condition I've had for nearly 2 years that, while I will most likely fully recover from soon (and mostly have), just won't completely go away, and it's been severely depressing dealing with as well. But now going midway into summer and finally getting into the state rehab commission, I have to face the possibility of going back to school or some kind of further training/alternative schooling.

I'm simply lost with what to do further with this. Again- I really believe this is the only way forward for me. And it doesn't seem like it should be this difficult to find something. Does anyone have any suggestions or ideas or references?

Bump- does anyone have any advice or suggestions at all?

I would think your difficulty is due to that autism is a relativly recent discovery so a lot is not known. There seems to be an awful lot of professionals that has minimal or a dated understanding of the condition.

Autism has been under study for years now. It seems like there'd be something out there for me, with all of this.

Since posting this I've yet to look further myself, but again, any ideas would be appreciated.

Could I ask what makes you think that there is definitely an identifiable cause behind your PDD-NOS? Are you hoping for a cure from this whole experience?

My guess for why professionals are not jumping at the opportunity is because much of the time, autism is idiopathic in nature. There may be a suspected or confirmed genetic cause that changes brain structure, but studies of identical twins have shown that there is only about a 90% concurrence if one identical twin has autism.

What I’m getting at here is that ASD’s are still a developing area of research, and despite there being years of study, the disorder is so complex and has so many possible causes that it is impossible to pinpoint a specific treatment that will be effective for autistic people. I think there is a possibility of such a “recovery,” particularly in milder cases, but not because of a change in brain structure or innate cause. Merely, the individual learns enough coping mechanisms to move off the clinical spectrum, so to speak. There is still autistic brain “wiring,” but the therapies/treatments have been proven effective enough that the symptoms are no longer pathological or clinically significant.

That’s just my two cents. I hope I didn’t completely misunderstand what you were saying here.

I'm no researcher so I am not sure. I think most of the time researchers are only studying something very specific (whatever their grant is for), and are probably unwilling to take unique cases out of sheer curiosity. I think a vast majority of research is done on young children only because they are still trying to ascertain possible causes. For this reason, the rarity of you condition may actually work against you, unless the person is specifically interested in your condition (I'm sure there might be someone out there, but finding them might be a hassle).

Sorry about being so late to reply to this. I got discouraged to begin with when posting this because of how long it took owing to software issues, and the lack of replies at first.

I don't see the cause of my PDD-NOS as fundamentally different from anyone else (or many others, since you are uncertain of whether it's actually genetic), in that was I born with it. But I do feel it has effected me uniquely, and I do feel that would make me of interest for the purpose of research. I don't expect any of what I get involved with to "cure" me, that has to come through a sort of self-actualization on my own. But I really believe this "experience" is the best opportunity to go forward and have stability in my life.

I understand "recovery" is not well understood, and the studies I've seen on recovery on PDD-NOS likely defined it as "the symptoms are no longer pathological or clinically significant." I personally believe I am different in that regard, but that is not the purpose of what I am looking for. Again, I am trying to see if there are groups or individual researchers I could reach out to and open up the possibility of being the subject of neurological examination as to the nature of my condition, and building something off that. For all intents and purposes, that could open up possibilities to "recovery", but that is not my main goal.

It's been months since I've really looked into this, as I've grown discouraged and another medical issue has really effected me this year. The last time I made any efforts, I tried getting apart of clinic studies that offered at best MRI scans (after extensive periods of examination) I could give to other researchers for interpretation. I also tried reaching out to the Cleveland Clinic in Ohio, but never really followed up on the reply- they mentioned reaching out to Autism Speaks for possible resources, which I will look into.

But again, any other suggestions are welcome. I have tried reaching out to researchers involved with other aspects of neuroscience, but not much has come up with that either.