Is there any benefit in getting an official diagnosis if it won't open new doors?

[Dmmetler]

S thinks that she may be autistic, based on doing some of the questionaires online. It has been ruled out when she had her last neuropsych eval, but truthfully, I could easily see it having been missed because S was a 12 yr old girl who could carry on a conversation with adults and had learned to make eye contact near someone's eyes, and given the report, it was pretty obvious that the neuropsych came in with some preconceived notions about homeschoolers, and I suspect would have considered anything social as related to homeschooling. 

 

S wants to go back to college for a degree in Radiological Science starting next fall. She already has documentation of global LD as well as her other health issues, and when she did DE, the college she did DE at was very, very helpful in giving 504 accommodations that we hadn't really thought about. She plans to live off campus, so she won't need a private room.  I'm really not sure an evaluation and an autism diagnosis would do anything for her that discovering that some of the things mentioned on forums for adult autistics are helpful hasn't. 

She has insurance now through her stepfather, but once her mother's divorce is final, which literally could be any day now (the final hearing has been postponed twice due to the fact that a lawyer has been sick every date it's scheduled for), she won't be. So that's another reason why I'd think it would be better to wait-she might be able to get an evaluation as a student more easily than she can now, particularly if she goes to the school she wants to go to (where they'd have students who are learning to do said evaluations and need practice). 

[KSera]

I have two with late diagnoses, and I think it’s been helpful to one and a mix of helpful and detrimental to the other. I don’t really want to go into the reasons publicly for that but could PM you. Besides issues of whether it would be a good thing or a bad thing for her to just know this about herself, the other issue is if state or federal benefits might ever be needed. For certain programs, the diagnosis must have been received by a certain age. It can be difficult to know while they’re still in school what their function level will actually be like in the adult world and whether they may need some of those benefits.

[Dmmetler]

S is 23, so the ship has sailed on anything that needs a pediatric DX, and I’m guessing autism at a level to be missed multiple times probably won’t help in getting services. Realistically, she’s had two strokes, cardiac issues, and has a long-standing history of learning disabilities, and if she has a history of no communications issues at age 12, but communications issues after strokes at 19 and 21, I’m guessing they’re going to be considered stroke related. I’m not sure that she wouldn’t qualify for disability now. I’ve been trying to get her to apply for vocational rehab, and I think she’s scared they’re going to tell her what she can’t do. (And as someone who had vocational rehab try to convince me to take a job as a child care aide or at Goodwill when I needed transportation assistance to attend graduate school, I don’t think she’s totally off base there). 

Edited November 19, 2022 by Dmmetler

[PeterPan]

It would make sense to update her psych eval to have accommodations to fit her new medical situation. I wouldn't expect that the psych who is the best person to do that eval is necessarily the best person to do an adult female ASD eval. She might find a brief 1-2 hour session with a psych specializing in adult ASD females would be completely adequate. 

As a total aside, I would be sure her processing speed is going to be adequate for doing the career she's pursuing.

 

[Dmmetler]

8 hours ago, PeterPan said:

It would make sense to update her psych eval to have accommodations to fit her new medical situation. I wouldn't expect that the psych who is the best person to do that eval is necessarily the best person to do an adult female ASD eval. She might find a brief 1-2 hour session with a psych specializing in adult ASD females would be completely adequate. 

As a total aside, I would be sure her processing speed is going to be adequate for doing the career she's pursuing.

 

I’d like to do another eval anyway, because her last one after the stroke came back with a significantly lower IQ than previously, and I think that had a real emotional impact on her. She’s recovered a lot since then, both physically and emotionally, so I suspect that numbers now would be a lot more accurate, and would be emotionally reassuring. 
 

 

[Storygirl]

You might take a look at the qualifications for an ABLE account. The qualifying diagnosis for opening one has to be made before age 26, I believe. If it's possible that she might need disability benefits from social security at some point in her life, an ABLE account can really help with managing her finances.

I also think that if she is questioning and wants to know about herself, that a diagnosis might help her understand herself better, even if it doesn't result in more benefits.

Vocational rehabilitation has been super helpful for my son, so I am a fan. But I'm sure that it varies by state and location and even by case manager that gets assigned. If she is willing to try, and it doesn't work out for her, she can always stop using the services.

[PeterPan]

On 11/20/2022 at 8:52 AM, Dmmetler said:

significantly lower

Doesn't seem like a good plan to tie your emotional health to numbers. I have a friend (middle aged) who had a stroke and I think this friend, who was incredibly brilliant, accepts the reality that it resulted in brain damage. So it could be that this dissatisfaction is not really about the numbers but about depression, rigid thinking, etc. which goes back to the autism question. I would up prioritize that and then, as the others suggest, see what needs to happen to open doors for vocational training, etc. 

 

[KSera]

On 11/20/2022 at 5:52 AM, Dmmetler said:

I’d like to do another eval anyway, because her last one after the stroke came back with a significantly lower IQ than previously, and I think that had a real emotional impact on her. She’s recovered a lot since then, both physically and emotionally, so I suspect that numbers now would be a lot more accurate, and would be emotionally reassuring. 
 

 

Honestly, in that situation I would be cautious about repeating IQ testing, since it sounds like she's attaching a lot to it. My only kid who had testing repeated from childhood to young adulthood had quite a large IQ drop from the first time to second time (from profoundly gifted to more normal kind of gifted). I don't think the number is highly accurate, nor important (our experience is that our child with the highest IQ is the most impaired and the one who is most likely to be closer to average functions at a more age-typical level than the ones with the higher IQs and I expect will have a much smoother transition to adulthood 🤷‍♀️). All that to say, the more she can know that the IQ number has little to do with how well life will go, might be for the better. My other kid who had repeat testing as an adult only had ASD testing at that point, and didn't repeat the IQ or academic testing.

[Lawyer&Mom]

27 minutes ago, KSera said:

 My only kid who had testing repeated from childhood to young adulthood had quite a large IQ drop from the first time to second time (from profoundly gifted to more normal kind of gifted).

This happened to me.  Off the charts IQ when I was five, much more normal “gifted” IQ when I was 38.  My psychologist explained that this isn’t uncommon and in fact doesn’t mean that *my* intelligence changed at all.  Your IQ score measures how far you are from the mean, and I was just that much farther from the mean at five than I was at 38.  As my age peers grew up and developed their own abstract thinking skills, the mean caught up with me!  And this has been my lived experience too.  I was much more of an outlier as a kid, but have many more adults I can relate to.  Which is a very good thing.

 

[kbutton]

2 hours ago, KSera said:

Honestly, in that situation I would be cautious about repeating IQ testing, since it sounds like she's attaching a lot to it. My only kid who had testing repeated from childhood to young adulthood had quite a large IQ drop from the first time to second time (from profoundly gifted to more normal kind of gifted). I don't think the number is highly accurate, nor important (our experience is that our child with the highest IQ is the most impaired and the one who is most likely to be closer to average functions at a more age-typical level than the ones with the higher IQs and I expect will have a much smoother transition to adulthood 🤷‍♀️). All that to say, the more she can know that the IQ number has little to do with how well life will go, might be for the better. My other kid who had repeat testing as an adult only had ASD testing at that point, and didn't repeat the IQ or academic testing.

With this in mind, I wonder if there is another type of test a psychologist could do that will look at processing speed, working memory, or other things that would be affected by a stroke and provide necessary documentation for a disability just in case she needs it. Then she could benefit from seeing what is affected without feeling like it's her overall IQ.

I have one 2e kid whose scores dipped in the middle set of testing (still 2e range) but increased modestly overall from first testing to latest testing; he had some therapies between the last couple of tests that made a difference (normalizing his auditory processing, etc.). The other one had his IQ go up substantially after getting on ADHD meds and having had vision therapy and OT, but the spread of scores also still reflected his language disability that had not been discovered yet (the artificially lower nonverbal score made his verbal score appear higher earlier on even though he was clearly gifted in the nonverbal domain IRL). The convergence issues were messing with his nonverbal section, and his ADHD and sensory issues had made it hard to stay on task for the first round or two of testing. The psychologist was surprised about both of them--she said that many, many kids drift back toward the mean as they grow. She spent a lot of time warning me ahead of testing that they would probably have lower scores. With mine, I think it's evidence that intervention for their specific difficulties was well-timed and unusually effective (not everyone gets the kind of results they got with therapy either--their providers are often surprised at how well they respond). They still had highs and lows in certain areas and definitely tested like 2e kids even as the scores increased.

Anyway, all that to say that trending downward over time is much more typical and to agree that it could be fraught to focus on IQ.