One comparison I see martyr parents make to autism is diabetes. Most of the time they have no experience with diabetes and the drastic consequences it can have. Autism is nothing like it, you cannot die from autism. Diabetes, at least type one, the parent or the diabetic is constantly making decisions all day about health and lives are constantly depending on the correct decisions being made.
A Look Into a Dangerous Diabetic Event
One part of type one diabetes is the impending doom, of seeing a positive test for ketones. This is what kills diabetics. Leaving ketones untreated for too long can lead to diabetic ketoacidosis. DKA is fatal.
The following story is being shared with permission from A.
The other day, A woke up and came to us and said his stomach hurt. He has never done that before and I am super proud of him because he took the initiative.
Anyone who is diabetic or has a diabetic loved one knows that is the first symptom of having ketones. His Dexcom sensor just decided it need to be changed early and his pump turned itself off.
I immediately jumped into fight or flight. We rushed to check his blood, his BG was super high and his ketones were large. I was freaking out. We calculated the insulin and bolused it.
In a non diabetic person, the pancreas produces insulin to fight off ketones and they don’t even notice it. In a type one diabetic, the pancreas does not produce insulin at all and the diabetic needs to take extra insulin.
When a type one diabetic is testing positive for a large amount of ketones, they are supposed to drink water, take extra insulin and rest. The high BG and ketones can make the person dizzy and nauseous. To make sure he could keep down the water, we gave him anti nausea medication.
Once A realized what was going on, he had fear in his eyes. The same fear I have and try not to show. I told him that no one is dying today and we are going to make the ketones go away. The one question people who are diabetic or have a diabetic loved one in this situation is “is this the day I/they die?”
A has experienced medical trauma and has been severely neglected by his biological mother. He was in DKA 4 times under her care. He came near death each of those 4 times.
All day, we pushed water and gave the insulin. We were in constant contact with his endocrinologist. By the time it was dinner time, his sugar was in normal range and his ketones were trace. We both hugged and cried. We all thought he would have to be hospitalized, and all of us know he has seen enough of the inside of a hospital room.
Why am I telling you all this? When I hear the comparison that people make between autism and diabetes, I get angry. Someone being autistic just means they need certain accommodations. If someone is diabetic, they can die from it. This means, the comparrison harms both communities. Saying this about autism makes it seem like its a fate worse than death. From the other side, it minimizes what people go through dealing with diabetes on a daily basis.
Don’t make this comparison, ever.