Stigma with autism diagnosis?

Parents Forum Learning Differences and Challenges - LD, ADHD
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This a just a reminder that although your daughter should disclose any and all disabilities and related issues to the disability office that information is confidential. She doesn’t have to disclose anything to anyone else, and can just say, I am registered with the disabilities office, you can confirm it with them. The office cannot disclose anything but will confirm a need for accommodation.

This is advice given to me from the director of a disability office.

My daughter had to request a retroactive medical withdrawal from a class. There were two big health related problems she was hit with during the semester, as well as one very destabilizing emotional one. The director was very clear about how my daughter could talk to her about that, but reminded her that it was her personal business that did not have to be shared with anyone else. She told her that even in her appeal to the administration, she should give no private health information but refer them to the disabilities office where all documentation was submitted.

Another thing is that my daughter meets with the disabilities office director every year to update her accommodations. After hearing of her difficulties in certain situations, she has made some very helpful suggestions about what to include in her list accommodations. So I do think it’s important to share as much as you can because you can’t always anticipate how a specific problem related to a disability might impact things down the road and it can be helpful to have it documented.

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And just to add, as a mom of a kid on the spectrum, I can see value in telling people and not telling people the diagnosis. I have heard my son tell people, “Sorry, that’s an autism thing, I hope that didn’t come off as weird.” He’s generally felt like people will give him more grace if they know he has autism and don’t just assume he’s odd, rude, etc… The flip side of that is that sometimes people will tip toe around him because he has autism and he doesn’t want that either. I think for your daughter, whatever she chooses is fine. She has no responsibility to tell anyone anything.

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DD is a junior; her preferred language is “autistic,” but she’s lived with her diagnosis since she was 2. She’s selective about who she tells: close friends, professors, but not acquaintances or classmates. She wears noise canceling headphones most of the time and prefers boots, jeans and flannel/hoodies for sensory reasons; we have to make her wear shorts/short sleeves if she’s going to be in the sun for extended periods. We’re in SC :hot_face:, so she does tend to stick out a bit with her clothing choices; thankfully she’s confident in her “quirks.”
She also tends to overheat even without dressing in long sleeves/pants; the clothing just adds to her natural tendency. I’m the same way in the sun; I have been my entire life. We stick to water activities in the warmer months. I use cooling vests, cooling towels, misters and try to stay in the shade and drink a 50/50 Gatorade/water mix to help with migraines from sun/heat.

A few of DD’S friends are on the spectrum as well; they didn’t seek each other out, just naturally came together through clubs. She’s gotten pretty good at recognizing others on the spectrum, which gives her a community to discuss frustrations and challenges. There are several online communities, but honestly some of them are toxic. She avoids stereotypical social media like Twitter/IG/SC. I would recommend counseling to discuss her feelings related to her new diagnosis if she’s up to it; sometimes understanding more about the characteristics can give an insight into how autism may be unknowingly woven into her personality (in a good way) and how/when to discuss her diagnosis that’s best for her, IOW make a plan and practice to help reduce anxiety around discussing it with others. DD started doing advocacy for more representation: autistic actors to play autistic characters in tv/film, more autistic individuals on BOD’s of autism organizations, speaking out against organizations like Autism Speaks; it’s given her a sense of empowerment with her diagnosis. There are some creators on Tik Tok: @Connerdewolfe, @SoundoftheForest @growthcouple that can help offer different perspectives and more positive images of autism.

As for accommodations, I’m happy to hear she’s meeting with the accessibility office. Nothing says she has to use the accommodations, but IMO it’s better to have and not use them than to not have them. Was she diagnosed with anything other than ASD and GAD: APD, ADD/ADHD? There are so many things available beyond extended time on quizes and tests; things like academic and EF coaches and adaptive technology like speech to text software. If she struggles with self advocacy, it will be great practice working with her professors to create a schedule/plan that works for both of them.

One of the most important things we can do as parents is listen and be a soft place to land. I was with DD on Friday when we were traveling to a concert; it was 4 hours of a complete info dump, everything from her fandoms to her advocacy to frustrations with professors. She was completely exhausted afterwards; she’d been holding it all in for 2 weeks (masking). Another parent job is giving them the safest place possible to be able to truly be themselves. Masking (acting what society deems as appropriate) is mentally and physically exhausting; it’s important your daughter sets aside time to decompress and recharge, especially after social obligations. As parents we need to understand meltdowns and figure out the best way to respond, which is different for each person. This is something a counselor familiar with autism can help her with as well; it will help to learn tools to self soothe, things like mindful breathing, weighted blankets, decompression spaces and techniques. I’ve made a point over the years to learn about her hyper-focused interests, so she always has someone to discuss them with. Does she have any family in the area? She may occasionally need a night away from all of the sensory input of college to be able to “breathe” without having to mask. Does she recognize her own meltdown triggers?

If you have any questions, feel free to send me a PM; I’ve spoken to several families handling the transition from HS to college with ASD over my last few years on CC. I’m happy to listen and brainstorm ideas. Good luck to her this semester.

Note: some of these issues may not apply to her, but I’m including them in case other readers may have similar concerns.

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My opinion…your daughter is experiencing some physiological reactions to certain sensory input. No one needs to know her “label” of ASD. But they do need to be aware of situations that could create a physiological or medical issue…so they will understand and be able to help her.

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My daughter is low-leveled ASD and high level anxiety disorder. She doesn’t have ADD/ADHD and her sensory issues weren’t given any official diagnosis. It took us more than a year to get the appointment for ASD evaluation as it’s hard to find a place that does testing for young adults. We were given a recommendation for counseling and therapy and DD has been seeing a therapist for a short time.

Like your DD mine also has mostly friends who are also on the spectrum.

Her brother and cousin are in their last year at the school so she does have a place to go for respite. Our biggest concern is getting her successfully through this college year so that she’s equipped to be there by herself.

I appreciate all the responses! If anything this helps me to see how important it is for her to register with the office of disability and to advocate for herself. Up until this point my DD didn’t have problems with overheating because she stayed inside a lot so she didn’t think any registering or accommodations were necessary.

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So DD went to the Office of Disabilities and Accommodations and to my surprise did a complete 180 with seeking accommodations. Not only is she exempt from required hikes, etc, but she also is cleared to receive accommodations for taking tests in the testing center, extended testing time, and assignment extensions. I was surprised that this was allowed for an Honors student and frankly I am a bit torn. DD never had any problems with assignments in the past or needing more time (always was top of her class and found schoolwork easy, 4.0 1550 SAT) and now I am wondering if she’s taking advantage of something she doesn’t need. If she gets used to these accommodations my husband and I wonder if this will be detrimental to her future (grad school, employment). Anyone have experience with this?

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If she’s anything like my adhd son, he only uses accommodations when he feels he needs them. Now, as a senior, I don’t think he’s used them for a couple of years. Being allowed accommodations, and actually using them are two different things.

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Since your DD has new diagnoses, it may take some time to get the schedule and timing down with a whole new environment. Perhaps she can work with SAS to develop a transition plan to phase out the use of extended time after she sees how everything goes. DD transitioned away from extended time in 8th to prepare her for the pace of her DE classes in HS. It had become too difficult to use extended time for things like group projects, not impossible, just more difficult to schedule with the other group members. Perhaps your DD could work on trying to use the time alloted for things like group projects first and use extended time if necessary for things like the 20 page term paper she will inevitably have due at the same time. It’s better to have it and not need it, than to need it and not have it.

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:rofl:

kids…just when you think you have the measure of them!

ime, they use the ones that are helpful for the situation. Our one with accommodations worked for a couple of years between UG & grad. The accommodations that were most helpful in UG were irrelevant while working, and when she went back to grad she re-activated (after admission) a couple that she thought were relevant (she ended up only using one or two very specific tools).

She says now that making the decision to go for herself- taking control- and figuring out for herself which accommodations were useful in what settings was probably the most important element of the whole process. She also agrees with us that maturity helps a huge amount, though she (and we!) wish that maturity evolved in a steadier way, rather than in fits and starts!

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I appreciate these replies! This is all new to me as DD only got diagnosed back in May. I did not realize that colleges offered accommodations like this especially with an honors student. But after talking with DD today I understand that this gives her a feeling of relief, that if she gets overwhelmed she can seek this help.

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And this might just be all she needs! Good for her. Self advocacy is so Important.

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