Caring for someone with autism and a cancer diagnosis

You sound like a very caring parent. Your daughter is lucky to have you helping her!
There is a discussion on Mayo connect for adults with autism/ASD. It is not specific to cancer but they might be helpful in finding some solutions for you from their personal experience dealing with medical issues.
https://connect.mayoclinic.org/discussion/seniors-on-the-spectrum/
It seems there are multiple levels to your situation. There are the cancer treatment side effects that members might help provide suggestions on how to deal with them, there is the issue of autism and possibly communication or anxiety or difficulty adjusting to new requirements including doctors/treatments/places, and then also being responsible for her care. It’s a lot!

This article from the American Society of Clinical Oncology,
https://dailynews.ascopubs.org/do/autism-and-cancer-creating-comprehensive-solutions-complex-needs, has some general suggestions that might be helpful. Although, after 23 years of caring for your daughter you may have already tried what they are suggesting. I don’t want to be yet one more person providing the same answer you’ve heard so many times before.
They do recommend creating an Individualized Oncology Support Plan (sounds like an IEP, right?) But maybe there is something on their list that would be helpful for your daughter.
An excerpt:
“One means of accommodation available within an IOSP is the provision of coping support through cognitive picture rehearsal, pioneered by Groden et al. Cognitive picture rehearsal is an instructional strategy that uses functional behavior assessment to identify antecedents or stressors particular to the person. A positive coping scene is created according to this information and is designed to train a more adaptive manner or response. In addition, stress-reduction techniques, such as relaxation training, that combine behavioral and cognitive elements are highly effective. These tools help change attributions and provide learning mechanisms for self-control that the person with ASD can access as needed.”

I’m sorry I can’t be of more help. I have an adult sister with a developmental disability, not autism and no cancer, so I have a small inkling of the challenge you are facing. I hope you can take the time for the self-care you need. I’m sure you are on call 24/7, 365 days a year.

Welcome, @kwerner. I've added your discussion to the Autism, Caregivers and Thyroid Cancer support groups to connect you with people I know can be supportive and helpful as you and your daughter navigate these new waters.

In addition to the helpful post from @tricot, allow me to introduce you to @gingerw and @auntieoakley who live as adults familiar with autism and managing a cancer diagnosis. They have also walked as caregivers to loved ones. @koh @bfrank @lbrockme know what it is like to live with thyroid cancer, treatments, side effects and more.

Kwerner, it's so hard to feel at a loss to help someone you love. Can you share a bit more about the side effects of chemo that you're daughter is experiencing? What emotions are challenging to comfort?

Thank you! That was incredibly helpful. I will be looking into that. This is a multiple layer situation for sure. So anything to help her get through this helps me get through this. Again thank you.

Thank you kindly!

Hello @kwerner , it sounds as if life has gotten bumpy for you. @colleenyoung tagged me because my situation is similar to your daughters, not the same of course. I am on the spectrum and life can be very challenging at times. When I was diagnosed with breast cancer in my 30’s it was awful. I am going to tell you, that the awful part was trying to navigate the all the appointments where there were so many different people. I don’t know what your daughter is going through exactly but you have to know that she can get through it.
Your daughter is lucky to have you, remember to take a few minutes to breathe, it is heart wrenching when you cannot fix things for a loved one in hard times.
Can you tell me more about your daughter? What are her strengths that will help her move through this hardship?

@kwerner, Please let me add my welcome to Mayo Clinic Connect. I am glad you are reaching out to help not only your daughter, but yourself as well! Having support while going through cancer treatments is important for the patient!

Like @auntieoakley I am on the autism spectrum. That is a large spectrum, to be sure, and how things affect us can change from day to day, it seems! And being on the spectrum itself has a lot of definitions, that need to be taken into consideration. Things can be overwhelming, and I find for me, that writing things down so my mind is not overburdened can help a lot. There are a lot of different types of cancer treatments, and how she handles side effects can really be different than how someone else might. Is there a social worker at her cancer care center? Can you arrange to speak to that person and hopefully get some ideas? If her care team is aware of her autism, and are educated on how all this is affecting her as an individual, they may be willing/able to change up their approach a bit and help her feel more comfortable.
Ginger

I am so sorry to hear about the challenges you and your daughter are facing. As Colleen shared, i have lived with thyroid cancer for many years. I also have experience with a child with autism and have worked with many.
From my experience as a cancer patient one of the hardest parts was feeling out of control of what was happening to me and my body. I also know that for most individuals with autistic minds , it is very unsettling if they do not know what is happening next and have a clear understanding of the path ahead. When you add fear into the mix our minds don't function very well ( for everyone) , because our emotions are so high. For those who can be more reactive at times, it is compounded.
My suggestions would be to try to help her understand that it's a normal feeling to not feel in control, to be afraid ... everyone does.
I would try to find tangible ways for her to see what lies ahead. Maybe a large treatment calendar , that if she's able, she can write in Dr appts etc, or stickers to put on those dates. And then, marking those dates of when it is accomplished, so she has a visual and tactile way to sense control of her schedule and accomplishment. Don't forget to allow her to be part of decisions, even if it's just listening and deciding on the date rather then the actual treatment. " we need to do this... how about this day?"
Journaling can be helpful, so if you help her get a notebook or journal book that she writes in, even if it is just one word... "what do I feel today? In one word. "
Depending on her functioning level, pictures, stickers etc can be used. This helps her to process in her brain, her emotions. Again a visual, tactile and tangible control for her .
She may have increased fatigue, but be sure she spends time in nature , even if it's just bundled in a chair. Nature and sunlight have positive effects on a body and brain that are under stress. Also do things she enjoys. Laugh ! Laughter is healing.
Appetite may be an issue. Especially if she has food aversions. A small amount of a juice or something sweet can trigger an appetite right before a meal. Don't worry as much about nutrients if it is a issue. Right now it's about calories for healing. You can use vitamins etc for nutrients.
Have patience, with her, but with yourself as well. This is hard stuff. What a great advocate you are. Her person!
Are there specific issues you are experiencing? Questions?
Prayers for you!