@windyshores You might find someone who specializes in AIED by contacting one of these organizations:
Genetic and Rare Diseases: https://rarediseases.info.nih.gov/
National Organization for RareDiseases: https://rarediseases.org/

They have doctors that you can be referred to, but you may have to travel.
Will you call and let me know if you get a referral?