How often do you have your dc get a formal evaluation for ASD?

[popmom]

My youngest is 15. She was formally dx'ed with autism and dyscalculia at age 11. She would like to go to college, and I think it's a reasonable goal for her. I'm guessing she needs a more current evaluation in order to receive accomodations for standardized testing. I know that the ACT isn't as important as it used to be, but it may be her ticket since she's not going to have a transcript full of AP classes. 

My fear is that she has made so much progress that she won't require the ASD diagnosis anymore. Is that possible? I'm pretty sure she will still test as having dyscalculia. I mean she's made a ton of progress. We are finally moving into pre-algebra, but she still counts on her fingers sometimes. 

ETA: She sees a psychiatrist regularly because she takes Vyvanse for binge eating disorder. This psychiatrist also puts down ADHD as one of her diagnoses. When she had her initial evals at age 11, that dr said she didn't have attention deficits. Current doctor sees attention/executive functioning deficits in real life scenarios as she has gotten to know my dd. Hence her adding the ADHD dx.

How recent does the dx need to be in order to get accommodations?

Edited July 21, 2021 by popmom

[kbutton]

Our psychologist is willing to “update” with a letter and minimal testing. You might ask what is acceptable and see if someone would do that for you if the school will take it.

 

[PeterPan]

We didn't use college testing accommodations because the differences between her scores, once she had the meds, weren't enough to be worth the hassle. Extended time would have increased her math score but not her others. Since the average came out ok, we didn't worry about it. So that might be the first thing to do, trying a sample ACT to see what happens. Start with one color and change at the time and let her keep going till time and half. That way you'll know both ways to compare.

Yes, you would update with a psychologist. Yes, you should before college for accommodations. 

As far as losing the diagnosis, I've talked with people who thought that was a matter of pride, some indication they had done well, and obviously it's kind of preposterous. The person didn't change, their genetics didn't change, and their internal wiring (that is going to struggle in the next situation) didn't somehow change just because they're finally coping in their current setting. 

I think Kbutton's suggestion to go back to the same psych could work. Our ps didn't push it hard this time like they did before. I don't know if there was a seed shift or what. Granted we had data. I think the key also is to realize how ASD looks in someone her age so you can more clearly communicate with the psych. Probably she's masking or using supports and when that comes out, that helps them see the support and why it's still an issue. Sure if you go in and say nothing and act all blithe, it could make it harder to get some helpful analysis. So I think it takes some reflection to realize all the supports, strategies, etc. she's using and let that come out. Your important contribution is, of course, that developmental history to show the indications were there very young. 

Has she worked on Interoception and self awareness? Big piece. 

[prairiewindmomma]

You know, this varies very much university by university. Here's an example of what the documentation process looks like for a university by me: https://ds.oregonstate.edu/sites/ds.oregonstate.edu/files/documents/documentation.pdf  

Here's what it looks like at University of Texas, Austin: https://diversity.utexas.edu/disability/guidelines-for-documenting-learning-disabilities/

If you go and look at enough universities, you'll see that there is a wide range, but a lot of overlap. I see a lot more "testing within 3 years" than "testing within 5 years". 

[Storygirl]

Our special needs parent advocate told us that we should have testing at age 16 or after. But that was through the school for LDs, and our school does not evaluate for ASD. She did not say that we need to update the autism diagnosis (ours was done at age 15). Because autism is a developmental disorder that is not expected to go away, we think the documentation that we have will be sufficient. However, our son is already connected with county and state disability services and is not expected to go to college, so his needs are not the same as yours.

I agree that this will vary from state to state and from college to college. You might call or research the website of the schools that you think she might apply to. Or call your public high school's guidance department and ask what they advise for their enrolled students.

[Lawyer&Mom]

I don’t think it’s possible to outgrow an autism diagnosis.  It is possible for an autistic kid to look really good in high school.  They’ve learned and grown a lot  since childhood, but still have all the parental scaffolding.  High functioning kids can fall apart in college, when the executive functioning demands increase  just as the structure and scaffolding decreases.  I would fight tooth and nail to get my autistic kid documented before college, no matter how well they seemed to be doing in high school.  (I have an autistic kid, but we are still in elementary school.)

[PeterPan]

6 hours ago, Storygirl said:

Because autism is a developmental disorder that is not expected to go away,

Pshaw, haven't you heard that if you're a good homeschooling parent and doing a "good job" your kid will at some point stop qualifying for an autism diagnosis? Snort. Yup, had that one thrown at me once.

I'm with you--you is what you is.

[popmom]

Thanks for the replies! After I posted this, I was able to meet up with a couple of moms of girls in dd’s social skills group. First time in over a year! 
 

One of them had to submit documentation for accommodations for the ACT herself (I think because her dd is in a private school). She said the dx has to be within 3 years for ACT. It may be different for the colleges she’s considering. 
 

I need to do it this year.

Edited August 7, 2021 by popmom