Preparing for medical appointment with a teen with autism and anxiety

Posted by alexisdewilde @alexisdewilde, Jan 13, 2019

I will be bringing my son with high-functioning Autism and anxiety to the Pediatric Diagnostic Center in Rochester in March. We are being referred for a tentative POTS diagnosis as well as Chronic Migraines. Any tips or suggestions to help him prepare would be greatly appreciated.

Interested in more discussions like this? Go to the Autism (ASD) Support Group.

Hi @alexisdewilde and welcome to Connect.

I wanted to introduce you to fellow Connect members @rosemarya, @cynaburst, @audrapopp, @allegro, @HeartPatches, @kdubois, and @johnbishop as they have all been to Mayo Clinic or live in Rochester, and may be able to offer advice and suggestions in helping him be prepared.

Back to your son, how has he been feeling?

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Hi @alexisdewilde, I would like to add my welcome to Connect along with @ethanmcconkey and other members. I'm wondering if watching video tours of the Mayo Clinic Rochester Campus might help a little with not knowing what to expect. I've included a few other links that I thought might be helpful. Has your son asked any questions or expressed any concern about the upcoming appointment? Maybe some of the other members may be able to offer some suggestions.

Mayo Building - Mayo Clinic Patient Video Guide - Minnesota - YouTube
-- https://www.youtube.com/watch?v=Hl8T3ubzqsk

Rochester, MN Charitable Lodging
-- https://www.experiencerochestermn.com/mayo-clinic/hotels/charitable-lodging/

Rochester Mayo Clinic Concierge Services
-- https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

Map of downtown Rochester Accomodations:
-- http://318commons.com/main/wp-content/uploads/2015/03/Dowtown-subway-and-skyway-map.pdf

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@alexisdewilde, there is another discussion here on Connect which may be helpful to ask any questions your son may have from other members living on the spectrum and you will be able to meet @mamacita, @gingerw and @sirgalahad who may have some valuable insight to help with your son's upcoming appointment.

Groups > Mental Health > Adults On The Autism Spectrum
-- https://connect.mayoclinic.org/discussion/seniors-on-the-spectrum/

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@alexisdewilde, I want to add my welcome to Connect. I have been to the Mayo Rochester as an out-of-towner and have found Mayo Clinic to be a busy place, but it is a well organized facility. It is beautiful with its architecture and art and lighting. There are areas to relax between appointments. Some areas are quiet and relaxing, while other areas can be more noisy and crowded at certain times of the day.

I would like to add the link to all of the Patient Video Guides for the Minnesota Mayo. There is a vast collection and perhaps by seeing the surroundings ahead of time, your son (and you) can get accustomed to what and where you will be.
https://videotours.mayoclinic.org/minnesota-videos/
I recommend that you contact the Concierge Service that John has already shared with you. There is a live chat line (during business hours). It is a free service, and can provide you with specific answers to meet any special needs that you are concerned with.
I want to add that the entire staff and volunteers at Mayo are always ready to assist. And the businesses in the area are very aware and supportive of the patients who visit from out of town.

I wish you safe travels, and send my thoughts as your son has his visit.

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@johnbishop

@alexisdewilde, there is another discussion here on Connect which may be helpful to ask any questions your son may have from other members living on the spectrum and you will be able to meet @mamacita, @gingerw and @sirgalahad who may have some valuable insight to help with your son's upcoming appointment.

Groups > Mental Health > Adults On The Autism Spectrum
-- https://connect.mayoclinic.org/discussion/seniors-on-the-spectrum/

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@johnbishop @alexisdewilde Thank you, John, for including me in this discussion. Alexis, good for you for recognizing your son's possible distress at visiting a new location. Whether you are on the autistic spectrum or not, new places can be intimidating! You know best what triggers your son and how he reacts to new locations, so please take that into account as you prepare for your visit. Is he someone who is comfortable with surprises or does he need a lot of preparation and knowledge of exactly where he is going? That will make a difference on how you approach this trip. Take into account what has worked in the past, in other situations, and apply them here. As a high-functioning autie myself, I can say that new places are intimidating and I don't like surprises, so I try to prepare as thoroughly as possible. Having paperwork or something to keep me focused rather than stimming or reacting to external factors helps me a lot to stay semi calm. Hoping this helps and I wish you best of luck for you and your son. Remember we here at Connect are here for you and for each other!
Ginger

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welcome alexisdewilde and welcome to this group right now I am checking in but I will contribute .I have melted down again because of my family issues . I will chat but as an autistic I need direct questions .my executive function is off and little exhausted

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@hopeful1953

How to measure Adult diagnosis

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Hello @patsyp53, Welcome to Connect. Is your question how to measure Postural Orthostatic Tachycardia Syndrome (POTS) in adults? Or were you looking for information on how to diagnoses autism in adults?

Here is some information on POTS that explains how it is diagnosed -- https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots

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