My daughter just started as a freshman at a liberal arts college. Back in May after years of anxiety she finally got tested and discovered that she is low on the autism spectrum disorder and has high generalized anxiety disorder. She has no issues academically (got a perfect ACT) or with organizational skills but does have sensory issues that make her nervous and self conscious. She is being treated with low-dose Lexapro which has helped tremendously but still has a “weak constitution” (heat, crowds, excessive noise cause issues) compared to an average person.
She is living in Honors housing and there are some required social activities that include a couple of hikes. With the heat and humidity she gets severe nausea (part of her sensory issues) and can’t complete them without getting sick and turning back which just embarrasses her more.
The problem is my daughter does not want to be known as “autistic”. She doesn’t want to get any accommodations or have others know about her diagnosis. The truth is you wouldn’t know that she’s on the spectrum except for her sensory problems and more quiet demeanor. She feels like people knowing would hinder her social chances as the label “autistic” makes people think of the extreme. As she said “nobody wants to be roommates with Rain Man”.
However, I think it would be helpful for those in charge to know of her issues so that she could be accommodated like with the required hikes.
Has anyone gone through this, having a student who doesn’t want anyone to know of their diagnosis because of the stigma attached?
The situation you describe is far more common than you might realize. While the circumstances or diagnosis are different many young adults go through this.
The most important thing is that she now has another resource to augment her self awareness. I would allow (and actually encourage) her to process and handle the news entirely as she sees fit. You are clearly supportive but I would limit myself to only offering advice when asked or needed.
This is her life and while tough on you she should be given the opportunity to keep personal information personal if that is her preference. Otherwise she may be inclined not to be ad transparent with you going forward.
I agree with previous posters that heat, humidity and nausea are not unique to ASD. All the women in my family get weird migraines and they can’t handle the heat without getting sick. My sister also has sensory processing difficulties, always has. She is not on the spectrum. Your daughter is in a new environment and learning her limits. She is also learning how to advocate for herself. An idea would be to ask that the group hikes occur either much earlier or later in the day because she is heat sensitive. Another idea would be to use an anti-nausea medication. I can give you suggestions because we’ve tried them all. That’s only if she’s enjoying the hikes and wants to participate. As for sharing her diagnosis; she will with the right people when she feels comfortable. Wishing her all the best!
Thank you for this advice. It is difficult when my daughter facetimes me, crying with how embarrassed she is with her physical responses. Another example is that they had a fire drill in her dorm and they were timed to see how fast they could get out. Her room is on the 7th floor and by the time she ran down the stairs (after being awakened from a nap) and stood in the heat for 20 minutes for the all clear, she lost it and got nauseous and started crying. Her RA was kind but also a bit annoyed? She also has issues with loud music which is common for a lot of dorm activities. This is why I was torn on whether she should divulge any of her personal information.
But for now I will let her advocate for herself. It is hard as a parent to get the texts/phone calls and to not want to “fix” the situation.
Perhaps you can suggest that she get a medical evaluation for the issues with the heat and humidity, since these are not necessarily related to being on the autism spectrum, and may be treatable or manageable on their own.
I.e. it is not necessary to think that every medical issue she may have is part of being on the autism spectrum or would require a diagnosis of being on the autism spectrum.
The school is in an area that is more humid than where we live so that is part of it. I also think my daughter just isn’t used to being as active as she is now.
Humidity is tough for the sensitive nervous system (has she been evaluated for dysautonomia?). I lived north of Chicago for a year and the winters were a piece of cake for me in comparison to the humidity in the summer. I’m hoping she’ll get used to the humidity. In the mean time there are personal neck fans she can buy on Amazon or cooling towels she can wear around her neck like FrogTogs (although in my experience these don’t work quite as well in humid heat). Drinking electrolytes will be helpful too. Adding electrolyte packs to her water (like Liquid IV) helps the body deal with the heat and reduces the chances of her blood pressure tanking (that’s what usually causes the nausea). This is a long winded way of saying I feel for her, she’s not alone and maybe some tips and tricks can be helpful. I’m sorry she’s sad.
Society is tough that if you aren’t what is considered “normal,” they slap a label on you. IMO nobody is normal. We all have our quirks. It’s what makes us human. Maybe some have more than others, but so be it.
I’m sorry your daughter is struggling. I have two nephews who were diagnosed as Asperger’s in the late 90s. Reading about autism over the years, I recognize that I have many of the traits, though I never considered myself as being autistic. However, a recent thread had me google autistic traits in adults, and I checked almost every box - except for being socially aware. I’m very aware of how one should be. I love studying people and discovering what makes them tick. I can interact with people very well. I just prefer to be by myself.
In any case, I understand where your D is coming from. I admit I’m now struggling with “am I autistic?” I don’t want to be. I don’t think I am. Does it even matter? What would one gain by slapping the label on?
But, she does need to be able to cope with the world. I’ve learned to own my quirks. Don’t apologize for them. Embrace them. There are plenty of people - myself included - who loathe heat and humidity. My body feels terrible. And I live in the south. I grumble, usually good naturely, about it. But if she can’t complete the hike, don’t be embarrassed. Be frustrated that your body hates it, but it is what it is. No need to be embarrassed. Plenty of people can’t hike for many reasons.
I’m also very noise sensitive. Find ways to cope. Headphones, hang out in the library? Go for walks when it’s not blazing hot? There are plenty of ways to cope, but she might have to discover what works for her.
This is exactly what my daughter is struggling with. She doesn’t want the stigma of the label and wants to be accepted equally as a friend, not a “charity” case. She also wants to work through her sensory issues and learn how to cope so she can have a good college experience and eventually a productive career. She has a lot of tools she’s learned to use like earplugs, noise cancelling headphones, quiet fidget toys, things to help with anxiety.Sometimes a diagnosis can help with understanding your own self but it can be a negative thing when you feel sharing that with others will just cause more problems socially.
My D21 is more reactive than most people. She has chronic migraines, mild anxiety, and is extra sensitive to heat, sun, stress, allergens, etc. When she was little, she fit under “high needs child” or sensory processing issues. I think that in the past, people like her probably did not get to go away to college because it was simply too daunting. We crossed our fingers last August, and off she went.
Her first year was a success, thank goodness. She did register with Student Accessibility Services for her migraines, and it was helpful. She doesn’t have to disclose the reason she is registered, although she did tell her professors. If your D had something like that, she could just say that she is registered for accommodations for health reasons and would like to skip hikes until the weather is not as hot.
Everyone needs accommodations of some sort in life. Those kids who seem impervious to everything will have their issues also. We all do eventually.
D21 also told her roommate and close friends about her issues as she got to know them. They are so supportive and understanding. When someone is willing to be vulnerable, it can be bonding. They also opened up to her about things that weren’t so perfect in their lives. It turned out that some of them also dislike loud parties, crowds and being around drinking/smoking. They joined the archery club together and started playing D&D. D21 blossomed.
She overcame her anxiety and went to professor’s office hours. She even joined a sorority through informal rush, and went on a canoe trip with the outdoor club.
She did need support from me to branch out and try these things. I texted with her every day and was very available to talk, encourage, send things in the mail, brainstorm etc. We communicated far more than most parents of freshman I know, but I don’t care about that because she thrived. When she gets the right support, she can fly .
She can say as much or a little as she wants. She could describe having sensory sensitivities to her RA without having to divulge autism. I have one on the spectrum, but he’s always been out with the diagnosis. People are generally kind, but I can’t say they don’t see him differently.
One of mine gets sick in the sun and is not on the spectrum. I get sick in the sun too and have lupus. I suspect my kid does too. Dystautonomia is another possibility. An MD can provide a note to get out of the hikes.
Registering with the Office of Disabilities or Accessible Education Office or whatever it is called, is confidential. She would however have to negotiate with professors.
It is common to resist accommodations and want to be “normal” whatever that is. I am hoping she accepts some over time.
The awareness of students today dazzles me. Don’t underestimate how many of her peers are already comfortable with people who don’t fall in the middle of the bell curve.
When your daughter is in a receptive place, and in the way that makes the most sense for how she processes things, try to help her recognize that other people are not nearly as invested / interested / even aware of her as she feels. That crippling self-consciousness aggravates everything- and is neither realistic nor helpful!
She is going on Monday to register with the Office of Disabilities and Accessibility and I told her I think that’s a great idea. For now she’s going to tell her RA that she has severe anxiety disorder from sensory issues. And she is getting excused from the future hikes.
I’ve also encouraged her to join an Anime club on campus as she’s a huge fan and that would be a good place to connect with others. She’s not sporty and a lot of activities tend to be sports-based.
Glad she is registering! Sun sensitivity and sensitivity to noise seem like two different issues to me, but maybe it is different for your daughter.
Anxiety is unfortunately so common these days, and the transition to college can be an exacerbating factor.
Great suggestion on the anime club!
I have observed anxiety quieting down during college years, for some anyway. Sun sensitivity and noise sensitivity tend to persist, especially the former! It’s worth seeing a doctor about the sun issue.
So one of my sons roommates at University of Michigan was on the spectrum. He didn’t care at the least. The dude was a double engineering major kid. He did mention something to my son (roomed blind) and I am sure my son’s reactions was “OK” . Your daughter made it this far. Just let her be who she is. She will find her peeps like anyone else. She might need to explain her autism in some situation to someone. It is who she is. Also talk with the disability center at college to answer some questions. It might be helpful.
The funny thing is from my experience is most kids don’t care. Be who you are and they probably have something also like Executive functioning, anxiety, depression, Adhd and the list goes on… I am not trying to make light of this at all but…
One thing we told our kids is that you can be whomever you want to be in college. You don’t have to be the same person you were in high school. Just be you and others will gravitate and Bet on yourself… But that’s a different discussion…
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. Your daughter made it this far. Just let her be who she is. She will find her peeps like anyone else. She might need to explain her autism in some situation to someone. It is who she is. Also talk with the disability center at college to answer some questions. It might be helpful.