My blog name, Stimtheline, was created to reflect the fact that I walk, and frequently cross over, the line between Autism and Eating Disorders. I spent almost two solid years in Eating Disorder treatment, and for the first year, we didn’t know that I was Autistic. Once I was diagnosed, everything about my treatment changed, because your typical one size fits all Eating Disorder treatment just does. not. work. for. me.
My first time in treatment after the Autism diagnosis, my wife created a document called How to Meesh for my team, which included a psychiatrist, a therapist, and a dietitian, so they’d have a better chance of success in working with me.
I thought I’d share it with you, as it’s a kind of interesting look into my brain, and it also shows how much eating disorder treatment needs to be altered to ensure the success of autistic patients.
How to Meesh
Meesh is very literal. She will take the most literal meaning from anything that is said to her, and does not catch many non-verbal cues or implied intent.
- Please try to speak in complete sentences or phrases. She gets easily lost when someone talks for an extended period of time, or does not make a clear point.
- Be blunt /get to the point – She does not catch subtle hints or direction.
- Please be prepared to ask a lot of questions! Meesh does not often volunteer information, and does better with directed questions, and help making plans or lists.
- Please Listen! If something is bothering Meesh enough for her to bring it to your attention, she will be very frustrated if she feels like she wasn’t listened to or heard. One of the things she has worked on since her last ERC stay is “using her voice” but she still has a very hard time expressing how important things might be to her. (Jess will reach out if Meesh has tried, but there is a problem that isn’t being addressed)
- If you want her to do something, she needs you to clearly tell her your expectations.
- Tasks and goals that are general or broad tend to confuse her, she needs them broken down into individual steps or actions, otherwise she will not understand how to do what is being asked.
“Are you willing to?” Instead of “Do you want to?”
Meesh will respond to the literal meaning of words like “want to” or “willing to”. This often means asking her the same thing multiple times, if someone starts asking if she wants to do something (this generally has implied intent), but you will get a better answer asking if she “will” do something, because she rarely feels that she “wants” to do things that she finds unpleasant or tedious.
“Experiments” instead of “Challenges”
We have found that rather than talking in terms of “challenges” to behaviors or meal plan changes, Meesh responds really well to “experiments” and the idea of setting up a scientific-like approach to trying a new strategy or approach a couple of times and reporting back on the outcome.
“Impressed” instead of “Proud”
Meesh does not seek much approval from others, and she has a negative reaction to people who congratulate her or tell her they are proud of her for things that she doesn’t believe are actual accomplishments, like doing things that are part of her normal daily expectations from her team.
Signs of overstimulation:
- Stims like rocking, shaking head, saying “no no no no no”
- Jumping at every noise (hyper alert)
- Can seem completely unaware of her environment.
First Line Solutions:
- Leaving the room if a group of people is too noisy or otherwise contributing to her sensory input in a negative way.
- Music through her headphones.
- Ice pack on chest or neck.
If first line solutions aren’t enough:
- Dark quiet room
- Weighted blanket or lap pad (she has a lap pad with her)
If Meesh isn’t given the opportunity to avoid overstimulation, she will have a meltdown, which can involve crying, yelling, extreme sensitivity to touch and sound, and can possibly result in self harm.
For Meesh – Anxiety and Overstimulation are sometimes linked. If her anxiety levels are high, she has a tendency to be more sensitive to sensory input, and can become overstimulated.
Autism vs. Anorexia
- Sensory issues with touching foods that leave anything wet or sticky on her hands when she is unable to immediately wash it off. (This makes sandwiches and wraps challenging). This also leads to her using her napkin to clean hands after each bite if she is trying to use her hands.
- Foods with “grainy” textures are very problematic – for Meesh this means foods like applesauce, couscous, gritty sauces, multigrain bread.
- If the food (in treatment) is not what is scheduled, she will refuse to eat it, or melt down, possibly both.
- Repeated foods, meaning having the same thing twice on the same day, is very difficult for her, even when not struggling with the ED.
Eating Disorder Related (there is overlap)
- Some of the food related rigidity is ED related. However, she does have a lot of texture related preferences that are more Autism. If she’s talking texture, it’s less ED related.
- Precise attention to time of meal. She will only allow a 15 min variation from the “scheduled” start time of a meal at home, or she will skip the meal.
- Obsession with the idea that food “artificially affects her weight” because food has mass, and by eating it, she is adding that mass to her body.
We implemented these during my last stay in Higher Level care, and it was incredibly successful! I left Higher Level care in August of 2016, and I’ve been completely Outpatient since March of this year. Recovery with Autism is still challenging, but I’m stable right now, so my team is happy. And so am I!
I’m basically an Autism and Eating Disorder expert at this point, so if you ever have any questions, please contact me, and if I can’t help, I can help you find it. Eating Disorders are serious business, and there are more than just Anorexia and Bulimia. Binge Eating Disorder and Avoidant Restrictive Food Intake Disorder (ARFID) are just as deserving of help and recovery.