INTERSEX - Undiagnosed Autistic Adult Child - Networking

[louisev]

what an ordeal you and Grant have been through. You are entitled to the full medical records on your son, under the HIPAA law passed in 1986. You can request his birth records from the hospital you had him in, and anything that has occurred at any doctor's office since HIPAA (which would be when he was very small) you can get. I have a friend with a very rare presentation of Turner's syndrome (another genetic intersex condition) which was diagnosed before she was born, and her mother was offered a therapeutic abortion because the birth defects with Turner's can be very severe. Her mother chose to give birth to her, and she grew up not only very healthy, but also to a final height that towered over both her mother and father. She didn't even find out she had Turner's until she got a pulmonary embolism that put her in the hospital for several weeks, and her mother admitted to her true history. Pulmonary embolism is common in Turner's. But it took a great many vials of blood and a new karyotype to show the doctors that she wasn't making it all up. As in your case, I urged her to get her medical records from birth; and they confirmed her condition.