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Archive for the ‘Aspergers’ Category

(… or reflections on our anorexia journey)

The uni break went so quick. One minute she is home, next minute gone. lol, well almost. She went back earlier, so excited for the new unit, then realised she was back way too early and desperately homesick this time. She came back home, instead of toughing it out. She said she had a much better chance of not falling into depression or anxiety by coming back home. As always I observe everything she says and does. Sophie’s maturity surprises me to the level she has achieved (within a mere several months), her insight and empathy (so apparently missing) is finally blossoming. Doesn’t mean she was always calm and not hysterical at times, but a definite switch. Before she went back, the aspie side of Sophie was all organised. Doctor appointments made, counselling appt made, new referral appt with ED specialist made, classes sorted, disability needs sorted. She just ploughed through it all. This is the plus side of having aspergers.

The new ED specialist is more of a counsellor but has the insight and understanding of what having an eating disorder in your past means for you presently and how you relate and cope with life. Whilst Sophie has to travel to this centre, I am pleased she has taken this on board as an extra coping and learning tool.

It is also time to start weaning her anti-depressant medication. Five years is a long time to be on the medication, and now is the time to slowly (painfully slowly) wean her off and see how she responds.

For me it’s been a time of great reflection. 5.5 years into this, 5 years from diagnosis, 3.5 years from full weight stabilisation, 1-1.5 years with no anorexia behaviour or thoughts. It’s been an amazing ride, that only those who have been here know how crazy, mixed up, painful, the intense highs and the intense lows. Moving from small picture, every moment, every day stuff to big picture stuff that encompasses months. Being part of a new parent support group too, has been part of this reflection. I have had to think back to the very beginning, remember things I thought I had put away forever. It’s actually been a painful journey for me, but it has honed my thoughts and beliefs about eating disorders and taught me to be far more articulate and to advocate on a higher level.

Thought I would put together a summary – seems a timely thing really.

our anorexia journey

Biggest Mistake
* under estimating how long, painful and soul destroying this journey is
* feeling guilty that I had somehow caused this

Biggest Misunderstanding
* that we could get through this in a couple of months – not years

Biggest Regret
* not demanding more from the health system around us or challenging the wrong beliefs at the time

Biggest Fear
* wondering if at times I could continue to care for her
* her dying before we could turn this around into recovery

Biggest Lesson
* how quickly you go from health to critical and in a hospital bed
* how you can never never negotiate with an eating disorder
* your child is totally separate to the eating disorder behaviour
* comorbid illness are a part of eating disorders and make the struggle to recover harder and can become a part of life afterwards

Biggest Myth
* you don’t have to be skeletal to have anorexia
* relapse is a valid and normal part of recovery not something dangerous, fearful or not normal
* tube feeding is not a shame or psychological issue. Not now. Older women struggle with this and parents have their own hangups about this. The reality is very different for those in their teens who are tubed fed.

Biggest Support
* those I met going through this journey who were travelling it too
* having an amazing, strong, recovery focused team of five professionals

Biggest Surprise
* the inner eating disorder voice in my daughter’s mind. Like getting to know the devil himself.

Biggest Problem
* health professionals who still do not know how to diagnose or treat eating disorders
* the lack of resources (both money and treatment) for parents and sufferers to access to get treatment and recover.
* the different approach, government understanding and health systems in each country that actually hamper treatment when the illness itself is the same regardless of country.

What I did Right
* early detection, early intervention
* standing with her despite the horrors of the illness and behaviour and walking with her to recovery

What Benefits Did We Gain
* obviously my daughter’s life and health but also gaining a deep, close and open relationship with my daughter
* gaining some wonderful new friends who truly understood and still stand by us
* an intimate and highly experienced understanding and knowledge of eating disorders that we can share with others

What Did We Lose
* the years my daughter cannot get back of her normal growing up time with her peers
* friends

Before Anorexia
* my daughter was anxious, highly strung, a perfectionist, a misunderstood kid with her peers
* I thought I had a plan mapped out for some kind of normal existence like every other family raising teenage kids
* I thought I was already a strong mum because of domestic violence.

After Anorexia
* my daughter knows herself so well compared to other kids her age. Whilst this is a plus it is also a negative, as she struggles to find a close friend
* I learned I am stronger than I thought, I learned a deeper side of me, and I learned the dreams I had no longer ‘do it for me’. I search deeper.
* I am still finding who I am now, I no longer want the same dreams. I still struggle to find my way around a kitchen after so many years tied to anorexia cooking and preparation.

The Blog Role
* ended up being far more than I ever thought, and gained me so much privilege to talk to others on all levels in this journey. Thank you!

What would I do Differently
This is very personal. It would be to leave our dysfunctional family domestic violent life instead of waiting til further into recovery. I had planned to leave just before my daughter started down the slippery slope. I thought (wrongly) that staying might have been better for her health. It would have given full FBT a better chance and a safe environment that had no anger, expectations, eggshells etc in it.

Family Based Therapy
That eating disorder recovery is NOT a one-size fits all. Despite the best statistics, FBT (Maudsley, FEAST, FBT types) don’t always work for some families. This is not a point to be guilty about or feel like you have failed. It just is. Means you just go and find what does work for your family and how to care. As long as there is forward progress into recovery then you are going great with whatever you are doing.

Families are not to blame
I will keep saying this shouting it from everywhere. Eating disorders are genetic based. Families do not cause eating disorder and are not to blame for an ED developing.

Overall
My faith took a pounding, became far more realistic and more honest. Like David I adore but I will question and ask.

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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 behaviour. When they get a thought or behaviour 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 behaviour. The two illnesses feed upon each other, and strengthen the thinking and behaviour. 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 behaviour 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 offence when none is given, is very literal and little sense of humour. 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.

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black and white thinkingWhilst black and white thinking can make decisions and life simple, it stunts both growth as a person, expression, communication and the ability to perceive or discern what is around us. Another way of explaining black and white is polarised thinking.

I have been watching my two. Both are black and white. What I didn’t appreciate is there are levels of black and white. You would think black is the extreme end, but no, we get black black and white white. One child is black/white – the other is black black/white white on the same things.

Being unique beings, my two also have differing things that trigger the black/white thinking. Communication can be difficult and understanding each other’s perception is challenged because one is polarised on an issue the other isn’t. Then in trying to find common ground, they try another tactic which can trigger a polarised position in the other child.

Frustrating yes, confusing yes. For all of us. I mostly see all the shades of grey when dealing with others which in itself can be disabling. Procrastination and indecision haunt me, because I am always seeing all the different sides and choices. When dealing with myself, I am more black and white, hence the depression.

For good reading on black/white thinking, polarised thinking the links below are very good at explaining what it is and how to change thinking patterns. Those with Asperger, eating disorders, depression, anxiety, BDD etc, all suffer from this pattern of thinking and it challenges the recovery process.

http://psychcentral.com/lib/15-common-cognitive-distortions

www.cci.health.wa.gov.au/docs/ACFE3E2.pdf

http://www.php.com/how-explain-black-and-white-and-gray-thinking

http://www.health.com/health/gallery/0,,20591880_8,00.html

 

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“Just tell him to eat or make him eat”

“Stop him from exercising”

Really on one side of things these statements are hilarious. They are coming from Sophie about her brother. She is glaring at me like I am neglectful parent and not doing my job. Clearly I have failed in doing the most basic thing like disciplining my son and getting him to eat.

She forgets totally (apparently) that we went through the same process with her and that you CANNOT make someone eat just because you want them to.

I try to explain that she was the same. That nothing can make a person eat or stop doing something if they are not willing to. That no matter what we did, she would not eat.

Sophie then gets annoyed with me. I am not allowed to talk about how she was whilst sick with anorexia and what she refused/was unable to do. She gets cross and defensive, brushes me aside and changes the subject. Kind of a conversation stopper really.

So back to square one. If she can’t emphathise nor understand why I cannot get Will to do anything, then she feels she can blame me and make me responsible. At least someone then is responsible if things go pear shaped.

However, on the other hand, Sophie does talk to her brother about some of the helpful tools she has learned to cope with the down times. But she does it more at the objective level, than the subjective level. She tells how it should be, not from her own real experience. She also expects Will to start using these tools straight away – again she forgets it took months to years for her to be able to do this.

It gives me a window into how much she has learned and been able to apply, and where she is still detaching from herself so she doesn’t have to use the appropriate tools.

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define normalAs the mother of two high functioning asperger children, I found the diagnosis of ‘normal’ for children so narrow and so unforgiving. Many mothers have found this across the board in many areas. The diagnosis of what is normal shrinks and it appears that most of us sit on the outside of ‘normal’.

Eating disorders is another area that normal gets confused. It is actually easier to say what IS NOT normal. The reason for this is that many industries tell us that it is normal to be thin, normal to exist on so many calories, normal to diet, normal to be underweight. The eating disorder itself distorts true normal anyway. Denial or rewriting normal is what the eating disorder will do – it skews your whole perception of normal.

I thought that instead of listing what is normal behaviour I would make a clear list of what is not normal. Stop the denial, stop the perverting of truth so you can start to hopefully see just how the eating disorder is controlling you.

IT.IS.NOT.NORMAL –

  • to exist on 1200 or less calories a day
  • to have a food/weight diary that is minute in detail that you are obsessed about filling in (a recovery food diary is different to this)
  • to have rules about food
  • to have strict routines, utensils or plates to eat food
  • to want to isolate yourself when it is meal time
  • to weight yourself every day (or more)
  • to feel guilty if you don’t exercise to the extreme each day
  • to feel guilty  (or worse) if you ate food
  • to have a list of good and bad foods
  • to have fears of certain foods
  • to feel fat, worthless, ugly, useless, stupid if you eat
  • to have a very real fear of weight gain
  • to feel depressed or worthless to the point of wanting to disappear
  • to think the only way to happiness is to be thin
  • to think that your thighs shouldn’t touch
  • to think your ribs (hips or collarbones) should clearly show through your skin
  • to restrict liquids (this is so dangerous – seriously)
  • to suddenly be vegetarian, lactose/gluten intolerant, vegan when there is no diagnosis or life commitment
  • to be cold all the time
  • to be in pain, weak, tired, dizzy or have heart palpitations
  • to think recovery means you are eating a tiny amount of  food not starving completely
  • to be addicted or obsessed with any kind of behaviour that consumes you all the time
  • to be intensely black and white (or rigid) in your thinking and approach to all areas of life (including food)

Got more…. Send them to me. I know the list can be added to.

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It has always been made clear verbally that Sophie has only ever suffered from anorexia. She has anxiety but not a disorder. She has no other co-morbidity illnesses or addictions, only the high functioning aspergers.

Until …

Filling in the equity assessment forms for university entrance, each need a statement from her psychiatrist. We have got these types of statements before for getting her through the HSC and school certificate exams. This time was different.

There clearly on the page was … “suffered from anorexia nervosa, body dysmorphia disorder, and social anxiety disorder“. Umm, hello!? Was anyone ever going to tell her parent, if not the patient herself.

We are over 3.5 years after diagnosis of the anorexia itself, surely somewhere along the line somebody could have mentioned the other two.

When were these diagnosis made and why. Understanding and learning from our end would have been beneficial. I assume Sophie’s counsellor knows of the labels as she keeps in close weekly contact with the psychiatrist.

So another ‘talk’ with the psych to find out ‘what the …’ and get a full explanation. That will happen in a couple of weeks. Sophie saw her counsellor today and I think they actually tackled how to express her feelings – particularly to her dad. In a positive way not a negative way that immediately breaks down communication. Thankfully her counsellor has given her several sessions from now to the end of year. Leave it up to Sophie and no appts would have been made.

mental health labels

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The image below comes from the Geneva Centre for Autism as part of their visual resource library.

Funny how things suddenly come together. My friend and I were talking about how our daughters just don’t connect with people – understanding, empathy, emotion, communication are lacking badly. Life is all about themselves, and how they perceive things and they both tend to have expectations that life should deliver the ultimate, unique, special experiences. We have even got down to the level of wondering if there is another disorder lurking within: narcissism, borderline personality disorder. You grasp at anything sometimes to try to understand the apparent coldness in our daughters.

We also wonder why our daughter’s cannot express themselves or deal with the underlying issues of the anorexia with their counsellor. We put it down to being 18 and not able to connect deeply or articulate it at that age. It gets frustrating each time they come back from counselling that they STILL haven’t got any closer (even moving further away) from talking about what underlies the anorexia.

Sophie’s counsellor emailed me last night about other stuff, and I talked about all of the above with her. She too has found exactly the same!! She cannot progress Sophie to talk about issues or find emotional connection because – in her words –  she as a quite a poor theory of mind. 

MEANING: her apparent lack of ability to identify what’s going on and connecting the (what seem to be obvious) dots. It means teaching her about feelings and emotions – her own and other peoples – and trying to find ways to get her to become aware of her own state of mind, reviewing different perspectives etc  but it can’t be to the ‘deepness’ level that you and I might consider essential to the resolution of emotional wellbeing/healing.

The image below was also sent to help me understand and it finally all makes sense. I can say yes to all of those items on the left – they are my daughter. And clearly she needs to be taught how to achieve what the rest of us can ‘just do’. By her counsellor sharing this, and the fact that it helps her lower frustration levels of not breaking through to Sophie, I can therefore do the same. It means perhaps taking a teaching mode at home, not an expectation mode. It will remove the frustration Sophie and I have when trying to interact, or when I expect an answer from her about deeper stuff.

It also saddens me that there is so much psychology that my daughter struggles with, sometimes without even knowing what it is, but knowing she is ‘different‘ to others. Making her feel like she is still behind that glass wall and not connecting to anyone on the level she would like.

Asperger's and Theory of Mind

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