Finally, have found the time to write this. This is our experience, I can’t talk for everyone who has asperger’s and an eating disorder (usually anorexia). Asperger’s is a spectrum illness so everyone is unique and on different areas of the spectrum. Anorexia is also unique for each person, particularly in their recovery.
By the time most sufferers of anorexia get to medical help, despite whatever other co-morbid illnesses are present or traumas suffered, the immediate concern and treatment is for the anorexia. Everything else is put aside til stability in health is achieved. It is also difficult to tell exactly what the mix of health issues can be too. The anorexia masks so much because it dominates the body and mind totally, and it also mimics so many other illnesses. It’s further into recovery with stable health and a mind more nourished, to get a better picture of what else is happening.
Will’s asperger’s was diagnosed early on but being high functioning and barely over the diagnosis line, it’s easy to think he is fully able to function like others. Whilst he has anxiety/depression the asperger’s affects his treatment plan.
Sophie’s asperger’s didn’t come to light until during her anorexia recovery. The anorexia highlighted the Asperger traits that she had carefully hidden or compensated for. It’s also the same for her, barely over the diagnosis line, it’s easy to forget the asperger’s traits in her recovery treatment.
Rigidness/black and white
Asperger’s is often about rigidity in thought and behavior. When they get a thought or behavior it can become a mantra, so tightly held it is very difficult to teach them how to let go and that it is safe when they do. Part of treatment is learning to be flexible. Teaching them that change is part of life, but also helping them negotiate that in a safe way. Change triggers a lot of emotions and rigid behaviours. They also love order and a set routine and knowing well in advance what might happen so they can plan to cope with that. Anorexia is also black/white, rigid thinking, routine or set patterns of behavior. The two illnesses feed upon each other, and strengthen the thinking and behavior. Treating the anorexia becomes a struggle of strengths. Both therapist and sufferer can feel blocked and frustrated that they cannot move into more flexible thinking and behavior patterns. With Sophie, there is so far she can go before she hits the rigidness of the Asperger’s. Then it becomes very difficult to help her understand what is really going on. She also cannot fully understand why she cannot become more flexible, why others recover without the rigidness. An example would be food rules and fears, letting go of the incredible rigidness and fears she had was more to do with the Asperger’s than the anorexia. But the two illnesses together created a very formidable barrier.
Empathy and connection
Asperger’s is often called the ‘mask’. The face doesn’t show the normal display of emotions, nor is there the ability to connect with others on an emotional level. They get (sometimes) the logistics of it, can see other’s doing it, but cannot make the connection themselves. They cannot understand how it feels or is for another person. Anorexia is about cutting all emotions off, becoming numb, checking out so social interaction and normal emotional responses are damped down or non-existent. It helps the anorexia control the person and allow it to destroy the body and mind. Recovery is learning to feel again, connecting with your own buried emotions and reaching out and connecting to others. This is critical to recovery. Couple this though with someone with Asperger’s and again, they can only get so far in identifying emotions and feeling them, or expressing empathy for others. Sophie half gets empathy, and struggles to socially connect. She doesn’t get how to be a friend and often overwhelms her subjects. Will lacks empathy and struggles to connect emotionally. Both want to have full and normal emotional responses and connection. Both will also struggle to do that. In Will’s case he thinks a ‘pill’ will make him happy and be able to connect and feel for others. However that will never happen because of the Aspergers. Only therapy (that he may or may not be able to understand how to do) will help him to learn his version of empathy and connection.
Friendships and Social Awkwardness
Making and keeping significant friendships is a very difficult thing for someone with Asperger’s to do. They can be inappropriate in their responses, not understand social cues and ‘rules’, are unable to communicate at the deeper level that friendships require. Anorexia tries to isolate and destroy friendships for control. Friends of someone with anorexia also can find it all too hard, and just walk away. The majority of sufferers end up having to remake friendships all over again. Meaning, if you have Asperger’s then how do you make those friends again, how do you learn to social and emotionally connect to make friends when you can’t. Nevermind getting past the rejection phase of losing all your friends whilst being ill with anorexia. Sophie perceives her friendships on a different level to what they are. She can take offense when none is given, is very literal and little sense of humor. All Asperger traits. Making new friends in anorexia recovery is difficult – you feel an outstanding, different, still have food or social issues. Add a layer of Asperger’s to this and new friend making becomes a minefield of stops, starts, failures, and if lucky an occassional win.
These are the main ones that can create tension, frustration and a block to recovery. Whilst the other traits of Asperger’s can trip things up (little eye contact, perceptions of other’s talk and actions, being literal) they are more to do with relating to the treatment team. Sufferers can think their team is not believing them, blaming them, or is not making an effort. Instead of sticking to the team and pursuing a relationship, too many leave and start a pattern of changing therapists. This doesn’t aid long term recovery and can be behind many relapses.
The need is for a therapist who understands both conditions to help navigate the trickier parts.
The two illnesses requires more patience and understanding from all – the sufferer, family and friends – that recovery is going to be on very personal terms.
Denying or not treating the asperger side is also harmful. It leaves the sufferer with no full understanding of why they are like this, or how to change or learn to live with it.
