Hello all. I am seeking advice on how to best support my young adult daughter. She is 24 yo, graduated college 2 years ago, works a job, and living independently with a roommate in an apartment.
She was diagnosed with ADHD several years ago, then MS more recently. She takes medication for both and thankfully the MS is under control.
As a kid we identified that she was highly gifted with a high IQ and chalked up many of her quirks to this. She’s an only child so we had no comparison kid to look at.
She has mentioned to us (married parents) that she is really struggling with fatigue. So I recently visited for a week to provide support, cooking, cleaning, just being a kind presence, etc. She is definitely struggling with the daily challenges of life such as cleaning, personal hygiene, cooking, car maintenance, bill payments, etc. We have been assuming this fatigue was due to MS, but she has had these same struggles prior to the MS diagnosis.
For the past few months it has slowly been dawning on all three of us that she has probably struggled with high functioning autism for all of her life. It really became clear to me on this past visit…. Constant hair twirling, difficulty leaving the apartment, very poor personal hygiene, rarely showers or brushes teeth, hyperlexia, easily over stimulated, etc. As a parent I feel terrible that I missed it for so long. But now I want to provide support as best as I can.
During my visit, I suggested to her to get an autism evaluation that we would pay for but she didn’t want to. She said she could be discriminated against which I thought was an odd response. We are in the US so any diagnosis would only be known if she discloses it. My thought is a diagnosis would help her access the correct therapies. Also, if autism is contributing to her fatigue, I’m assuming the support for that might be different than MS fatigue. Any thoughts or tips on how to encourage her to get an assessment?
Also, we are planning to spend an extended time with her this summer to provide support. Now I’m trying to learn as much as I can to help her set up systems that work for her. It feels like I’m playing a big game of catch up. Are there one or two books or other resources (podcasts, non profit organizations in the US) you would recommend to help me learn how to best help her? I would really appreciate any suggestions. I’m trying to find things that help me understand her as well as resources I can provide her that help us set up long term systems for daily living.
I know this is a long post. Thanks for reading this far. And thank you for any suggestions and advice.