I can write about it now. I knew it was coming, but for some reason it still made me sad. Derek got the "official" diagnosis last Thursday. The scarlet letter. The stamp in the book. The irreversible words in the medical records that will forever make it hard for Derek to get health insurance, additional life insurance, even a job. He will forever be known as AUTISTIC. Up until last Thursday he had only been known medically as "developmentally delayed." He had the school diagnosis of autism, but we'd been trying to avoid the medical one for all of the reasons listed above. We didn't want it to be permanent--in case he made some miraculous recovery. But it was becoming pretty obvious that even though he has made great progress, Derek is always going to have major challenges in life. SOOOO, I decided to take him to a specialist. I was not happy with his old pediatrician (she didn't know ANYTHING about autism), so I decided to take him to a new one. :) This one was "Board Certified in Developmental-Behavioral Pediatrics." :)
The second we walked into the office, I knew we were in good hands. The nurse tried to weigh him, but of course Derek refused. She had to weigh both of us, then I put Derek down, she weighed me, and subtracted the difference. Then she tried to get his height and he slumped to the floor, put his hands over his ears and screeched. I asked the nurse if she'd been told he was autistic. She said no, but that she kind of figured. Haha!
When the doctor came into the office, I asked whether we needed a medical diagnosis. He said no and that normally they had to observe my son complete a series of tests. We continued with the office visit and he asked a bunch of questions. During all of this Derek played with dinosaurs on the floor--talking to them in "Derek babble." Not a single thing he was saying could be recognized as an actual word. The doctor asked about Derek's eating habits and I explained how he eats primarily crunchy foods and is extremely limited. He said that right there is indicitive of autism. We talked about his sleep problems, the communication problems, everything. Then the doctor examined Derek. Derek freaked when the doctor shined a light in his eyes, he wouldn't let him look in his ears or mouth, and hated having him press his stomach. Can you say SENSORY ISSUES??? The doctor recommended I take Derek to a pediatric clinic that specializes in OT, speech therapy, and has a food clinic. The food clinic sounds interesting--I just hope our insurance pays for it...He also wants me to keep track of Derek's "space outs". Derek has episodes where his eyes glaze over and he stares off into space. You have to snap your fingers in front of his face or clap your hands to get him to come back. It's scary. The doctor thinks he might be having mini seizures. So he might have to have another EEG. We had one 2 years ago for the same thing, but it was inconclusive because Derek kept pulling the electrodes off his head. He never fell asleep during the test even though he was sleep deprived, and he never had an episode during the test. So we didn't find anything out. Sigh...I doubt he'd do any better this time. He is even MORE sensitive to things. I'm guessing he'll pull the electrodes off AGAIN.
Anyway, right when we were leaving, the doctor said, "I am going to give Derek the medical diagnosis of autism. I don't need to do the formal tests. Just by observing him today I have enough information to give him the diagnosis." OUCH. I know it's obvious there is something wrong with my son, but when a specialist can diagnose him within 30 minutes???? Wow. I'm not going to lie. It stung a bit.
The rest of the day wasn't much better. Derek is going to be in a documentary about autism. They wanted to get a haircut on film. So we did. 20 minutes of Derek sitting in my lap--doing everything he possibly could to escape. He screamed, cried, gagged (on the hair that got in his mouth), and looked at me like I was the worst mom in the world. I hate haircuts.