<p>“Yes, shrinkwrap, we’re starting with AD and ADHD testing, even though his high school said that wasn’t the issue.”</p>
<p>I was thinking of starting with his PCP, or maybe a psychiatrist or psychologist. </p>
<p>You’ve probably explained this already, and you can just tell me what post number, but what where the circumstances that led his high school to be talking about ADHD?</p>
<p>Morgana, it sounds as if you and your son have chosen your path. I truly hope this works out for him. And it’s true that we know our own children, and our own experience, but we don’t know your son. I hope you have found some thoughts on this thread to be helpful. Please keep us updated.</p>
<p>Just a thought… I was able to get my testing done through a research study being performed at a university. I’d found a website listing the different research projects being done and somebody was doing a study on autism and mood disorders, so I was able to be tested for both by participating in the study. I didn’t have to pay for the testing but did pay for the diagnostic report to be drawn up since that was an extra step not part of the study. Just another stone to look under if you can’t find a suitable place to seek testing. I got this idea from a CC member.</p>
<p>I have had the most horrible time with doctors. There are so many, even in the psychology profession, who don’t know anything about what high functioning autism looks like–especially in adults. I agree that a full battery of LD and medical testing is necessary if you suspect something is wrong, but I think sometimes if you suspect autism you really have to seek that specific testing out. I think too many doctors see the signs of the overlapping conditions and stop there without digging deeper.</p>
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<p>I don’t get this. This is your son’s health you’re talking about. I have no personal knowledge of the issues surrounding asperger’s/autism, but consider this: if your son had cancer and needed an oncologist / chemotherapy, would you let being in the sticks get in the way?</p>
<p>So you live in the sticks. So what? Travel to the city and stay in a hotel. What could be more important? </p>
<p>I get an underlying sense that you pride yourself on being “off the grid” (metaphorically and literally) and this can provide a convenient excuse to avoid taking steps to deal with reality. Your son needs help. It is unfathomable how you could have “suspected” for years but just gone on your way. Best of luck to you, and there are some great pieces of advice given to you from parents who know this path.</p>
<p>I agree with all the advice you are being given, and want to add this: get him tested at a sleep center at a hospital. If there are significant issues with an ability to wake up and to maintain daytime alertness, be sure the doctor knows this so he not only does the overnight testing, but stays for several hours during the day to be evaluated for issues such as narcolepsy.</p>
<p>Diagnosis of a sleep disorder does not make all the other issues magically disappear, but addressing that problem gives the person a stronger footing to deal with them, and in the case of ADD, for example, a medication to address narcolepsy can work better for attentiveness than a stimulant.</p>
<p>There are many online course options these days that are valid and done well. The challenge is finding programs that do it well. Our children have taken a handful from different universities so get to see it first hand. UN-Chapel Hill, Stanford, University of Virginia, University of Massachusetts, Johns Hopkins Center for Talented Youth, George Washington University, Anne Arundel Community College, BYU, the Khan Academies are all ones we are personally familiar with. For anyone considering online, explore which formats work best for you and know many universities and colleges are getting in to online these days. To morgana, check out your son’s university; they may even have online courses available.</p>
<p>I’m curious about your sons roommate. Does he have a good relationship with him? Does he interact with other students at UoP? I have a D at the school so I have fairly intimate knowledge of the scale and setup. If he and his roommate are not speaking or his roommate has gone to the RA or Dean with concerns that should be a major red flag.</p>
<p>For those of you who have found specialists in “testing” for high functioning autism to be essential, besides the diagnosis, what was the most helpful part? I imagine in some subset , the diagnosis meant accommodations had to be provided, but could any of you share any specific accommodations that seem uniquely beneficial to those with high functioning autism?</p>
<p>I have testing in quotes because I am under the impression the tools we have do not meet criteria for what we call “tests” in the medical community.</p>
<p>Also, for those of you recommending specific tests; I am curious how you would walk through a cost-benefit analysis in this scenario. In other words, how do you think about the “bang for the buck”, for those paying cash, those paid for by the government or great employee benefits, or for most of us in between. Whether you have a high deductible, or no insurance, or are planning for one of those state mandated allocated pools (not sure if I’m describing that right, and I dont want to make this political); this is a very real issue right now, that all of us should be grappling with.</p>
<p>BTW, I understand my question might be somewhat off topic for the OP, but you I feel you guys are among the smartest and most well informed on this topic, and I have always wondered “what CC would say” about this.</p>
<p>shrinkrap, the neuropsychological testing for my bright, high-functioning spectrum son was helpful in several ways. </p>
<p>As you may know, these kids/young adults on the spectrum may have a plethora of diagnoses. What we did not realize prior to the testing was, he has a form of OCD which we were mistakenly thinking was an expressive language disorder. He gets stuck on words. As a very simple example, if he were asked “What is your favorite food?”, his innate honesty and would cause him to go in mental loops about all the possible foods and their relative merits, and how truthful would it be to say spaghetti when maybe he likes tomatoes better? Now transfer this process to an english essay, and you can imagine the agony. It LOOKED like an expressive language issue (verbal and, especially written). But knowing it was OCD allowed us to medicate him properly and he is now much more fluid in his speaking and writing.</p>
<p>In general, we did not realize how anxiety-driven he was, prior to testing.</p>
<p>As a result of the testing, he now gets time-and-a-half on all tests and essays, which is very helpful.</p>
<p>I am interested to learn how many of us have a gifted child with learning and mental health issues. I am going to dig around a bit to see if CC has a section of the forum where we can share. There is a lot of support to be had and a mental health forum wont necessarily satisfy all of our needs as we still have intelligent students trying to get in to and succeed at top colleges and universities.</p>
<p>[Psychiatric</a>, Psychological, and Specialty Services | Stony Brook University Medical Center](<a href=“http://www.stonybrookmedicalcenter.org/codycenter/specialty_services]Psychiatric”>http://www.stonybrookmedicalcenter.org/codycenter/specialty_services)</p>
<p>Friend had her son thoroughly evaluated at the Cody Center which is associated with Stony Brook Hospital. Maybe the site will prove valuable to the OP.</p>
<p>Thank you, calla. I think you are saying the neuropsychological testing ruled out an expressive language disorder, and revealed he had a form OCD that benefited from medication.</p>
<p>Shrinkrap, the testing revealed he had OCD. There is never a guarantee that medication will help but there ARE meds that are known for treating OCD (certain SSRIs) and S2 did get much benefit. We would not have gone this path had we not known.</p>
<p>Yes, I get that, and rephrased my original comment. Thanks again. I wonder if therapy for OCD (typically CBT) was recommended in that scenario, but don’t want to go too off topic.</p>
<p>^^We didn’t get that recommendation, no. He doesn’t have any other (more typical) OCD symptoms. We are big supporters of therapy (and he spent years in a social skills group and with an individual therapist) but honestly the meds made all the difference in this case. </p>
<p>@dowzer: agreed. I would LOVE a special forum to discuss our very bright but challenged students.</p>
<p>" honestly the meds made all the difference in this case.*"</p>
<p>That’s great! Best wishes to him.</p>
<p>For me, the extensive testing at age 15 was a sad but valuable wake-up call. We thought our son had dyslexia and dysgraphia, as indeed he does, but we hadn’t realized the depth of his disability in other areas. The kid has five standard deviations between his highest Wechsler result and his lowest.</p>
<p>And when you ask, but why did we wait until he was 15? We didn’t. The psychologist he saw at age 8 diagnosed NOTHING, not even ADHD. The psychologist or psychiatrist (can’t remember which) at age 12 diagnosed ADHD but nothing else. The testing at age 15 yielded at Non Verbal Learning Disorder diagnosis. It was only at age 19 that he was diagnosed with Aspergers. (But now with the new DSM, NVLD and Aspergers are folded into the same diagnosis. They’re very very similar.)</p>
<p>So in your sons case, he is/was high functioning, but had something going on that indicated testing on a few occassions. I’m guessing the first few evaluations didn’t perceptibly change things. Did the last one offer some Aspergers specific recommendation you would be willing to share?</p>
<p>I thought it was aspergers ( and Rhett’s, and PDD, etc) and autism folded together. Is NLVD also going to be autism spectrum? One is typically a school/learning based diagnosis, and the others “medical”.</p>
<p>I think I’m perseverating about this a bit, so I’m going back to lurking for now.</p>
<p>The last diagnosis did offer some Asperger-specific recommendations, in addition to the disability accommodations:
<p>We had kind of hoped, at that point, that he would be able to do those things for himself. Well, he can’t. The first college he went to assured me that they could handle these needs. They didn’t.</p>
<p>I guess you’re right that NVLD is a school/learning diagnosis. That wasn’t clear to me at the time, and I wish they had just diagnosed the Aspergers. I don’t see the difference, other than that some people don’t want their children labelled with Aspergers (but I was never one of those people).</p>