The autism in this house has a control issue. There is need to control situations so that “autism world” is predictable and manageable. Phoebe has learned to say the right things, react a certain way when situations arise. Her training in school and various therapies have taught her this. Phoebe’s autism is a different kind of autism than what you would typically hear about. While at Yale Autism Clinic, the doctors were perplexed by her. They said to me, “She is autistic, but she’s different. She is verbally superior to most, but doesn’t understand a lot of what she is saying. She’s not classically autistic, or high-functioning autistic. She’s in the middle. Sort-of.” I thought that was great. I was overjoyed to hear the news, until another doctor told me that she would classify as PDD-NOS (Pervasive Developmental Disorder-Not otherwise specified). This meant that there wasn’t a lot of research on the disorder, as each person with it is so different. Great.
Irritability and control.
Phoebe takes some social cues from me, and will react in a similar fashion. If I cry, she cries. If I yell, she yells, etc. When she can’t get her cues from me, she will watch TV, and hear sayings or read them on Facebook. She also will do what others are doing if she is close to them. She has slang in her language (dude, ain’t, etc.). She will say things for a reaction, and she’s is really good at behavioral manipulation (and it works). She DOES NOT care if she gets positive or negative attention. She just wants it.
The last few years have been going great, and we got a great new Psychiatrist. I decided that we needed to address her weight gain. Phoebe is on high doses of anxiety and mood medications. This last few weeks I decided to lower the mood medication, to help with weight. What a mistake. I have not lived with her like this for a while, and it wasn’t pretty. I had forgotten what her true autism was like. Her anxiety was horrible. She kept me up all night when it stormed. She followed me around on the weekend, yelling at me, and cursing. She begged me to take her to Meijer and then stood in front of me at the store, blocking my view, and yelling that she wanted to leave (making a scene). She had a screaming, yelling, throwing meltdown in her bedroom when she said she was tired and went to bed (I didn’t even say anything). She cried and screamed for 20 minutes after finding out we weren’t taking her brother to soccer practice. At his soccer game, she screamed and told me I was a bitch for asking if she wanted her water at the game, and then cried at the game when I wouldn’t walk to the car to get it (as the game started). She was agitated at everything and everyone. I called her a ticking time-bomb of emotions. After one week, I gave up. I called the doctor crying. We immediately went back to the old meds. It’s still wearing off, but I see glimpses of the old Phoebe back now. After dropping her off at daycare today, I cried myself all the way to work. I can’t even explain why. I was so tired, and irritable.
Tonight, we made a trip to Target for Easter supplies. I was leery. I didn’t give us any expectations. I let her lead. It was good. No yelling, just our normal go to the back and make our way to the front and leave. We made it 25 minutes.
No irritability.
Baby steps (I hear snoring in her room as I type!)
Phoebe ASD World 