I’m sure I’m not the only one reaching their limit. As if AN isn’t hard enough, let’s throw in a world pandemic, just to test us a little more...
I have never written details on ATDT because I was always afraid my D would come across it. I don’t care anymore. So what if she does?! I need to put into words the absolute pain and anguish I feel every day living this life with a child with AN. The agony of watching other moms, who joined this forum at the same time I did, fix their kids and become moderators is some days so huge that I can’t visit for a time.
Our D has a history of depression and anxiety that predates ED by three years. At the time, I couldn’t imagine anything worse than your 10 year-old telling you they’d rather be dead. Our ED story is like so many others, the exact personality characteristics for an ED, coupled with a terrible 8th Grade Health class on calories, and comparing her body to others’, led to eating ‘healthy’ and within 10 weeks she was in the PICU with a heart rate that was so low the doctor said if he didn’t know she had an eating disorder he’d be doing CPR. I will hear those words in my head, over and over, until the day I die. (BTW, we were on a waiting list for ED clinic during that time.)
We did out-patient ED treatment with a team that said they did FBT (they didn’t) for a few months and you know the drill... bad help is worse than no help. We parted ways and went on a waitlist for a private psychologist who was actually trained in FBT. We worked with him for a year (he moved) and made progress. WR-ish. First menstrual period ever six months after he left. Three periods, none since. Weight started coming off because foods eaten narrowed and narrowed and now here we are, a year from last period, 15 lbs down. Halfway back to lowest.
Throw into this that she got a diagnosis of high-functioning ASD last April. I know many of you dispute a diagnosis while there is an ED, but the highly respected ASD doc said she could diagnose her just based off the clinicians therapy notes from all the sessions when she was 10 and depressed. Long before ED. And I would agree, going back to childhood. It presents so differently in girls.
So here we are. The black and white rigidity of the ASD complicates the ED treatment. I have yet to find a place that treats ED patients on the spectrum. There is a tonne of research coming out of UCL by Dr. Mandy, but what it amounts to is that they know regular ED treatment doesn’t work well for people with ASD, but don’t yet know what does. The ever-present depression complicates everything because there are no incentives because she doesn’t care if she lives. And 3 1/2 years of food monitoring and losing the battle is beyond unbearable.
I know that food is the answer (at least for the AN piece) and I’m not looking for advice on how to feed her. I did all that for two long, slow, painful years from reading posts here. I don’t believe FBT will work a second time for her, and I honestly couldn’t do it again.
Can you all please spread your info-gathering nets far and wide and let me know of any places that explicitly say they deal with AN in the high-functioning ASD population. I am dumbfounded that this is so difficult given the data on the number of women on the spectrum with AN. Or the percentage of anorexics who are found to be on the spectrum. And, to be clear, she isn’t what some people call an ‘autistic anorexic’, it isn’t an obsession with numbers (counting grams of fat, etc) or texture issues. She very much fears being fat. I’d call her orthorexic at this point. She eats all fruit, vegetables, meats, rice, almond milk, etc. but nothing ‘unhealthy’. She just can’t eat enough to maintain or gain. She exercises an hour a day (walk, bike ride).
Because I know it’ll be suggested, for the record, we pursued UCSF 5-day last year, got through all the pre stuff and the 2 hour interview and we were basically told it would be a waste. The child has to be able to ‘tolerate’ being there.
Thank you all, in advance.