F.E.A.S.T's Around The Dinner Table forum

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Torie
Interesting article - not sure how solid the science is, but this article reminded me of the challenges a few here report. Excerpts:

"Even though Sharon DaVanport was so underweight at 17 that she was diagnosed with anorexia, the label never made sense to her. She wasn’t obsessed with staying skinny or dieting — rather, she found that many types of food caused nausea or other forms of sensory discomfort. But when she tried to explain this to her doctor, she was told she was “in denial” about her real problems. Only years later, when she received another diagnosis, did she begin to make sense of her experience. DaVanport, now 50, a mother of four, and president of the Autism Women’s Network, has the type of autism formerly known as Asperger Syndrome.

"Researchers have discovered a number of surprising connections between autism and anorexia, which run in the same families and share many similar symptoms. Some experts even suspect that autism is sometimes misdiagnosed as anorexia in girls. Girls with autistic traits may restrict their eating because of a desire for order or routine, or because of sensory discomfort with food, rather than because of fears over weight gain. But a doctor faced with an underweight adolescent patient who doesn’t eat enough will be more likely to diagnose anorexia, which is stereotypically female, than autism, which has a higher incidence in males.

"I am highly reactive to food textures as well as odors. What comes off as a mild smell to someone else will be so overwhelming to me that I gag. I have the same response and gag reflex to various textures of food. I recall a time when I was 10 years old and I tried explaining to my mother that certain foods made me gag, or that the smell was so overwhelming it made me sick, but I was unsuccessful at communicating how serious my sensory issues were.

"I also recall making an attempt to explain the pain I felt from specific textures: I commented to my mother that peas tickled my teeth to the point it caused pain. My mother chuckled and replied that it was impossible for my teeth to tickle. The sensation I was trying to describe was the same feeling I had previously experienced when someone tickled me to the point it hurt. That was the last time I remember trying to explain my sensory challenges with food. 

"I was extremely thin during my youth, especially as a teen, and people constantly asked me if I was anorexic. I was sensitive to how thin I was and I developed a lot of shame connected to my physical appearance. I believe if I had been properly diagnosed as autistic, then the food aversions due to sensory challenges would have been recognized."

 

http://nymag.com/scienceofus/2014/06/what-its-like-to-have-anorexia-and-autism.html

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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deenl
Very interesting, Torie. Of course, if you restrict your eating because of high sensitivities you still end up suffering the effects of starvation like in the Minnesota Starvation Study. Although the path back to health is still nutrition it will be in a very different manner.

I have been struck by how many people on the forum here have family members somewhere on the autism spectrum. To my very layman's mind it seems that many of these traits must sit in a similar part of the brain; high intelligence, autism traits, eating disorders, high sensitivity. Of course there are many personality traits that are shared by such people; black/white thinking, perfectionism, difficulty set shifting, need for order, introversion etc.

Which is the chicken and which the egg?

D

Edit: PS Happens the other way around too. Our son was misdiagnosed on the autism spectrum and not treated for his ED at all!!!![mad] Wasted flipping 6 weeks meanwhile ED was really getting stronger and stronger. Did just hear that they had a very critical internal review over the handling of our IP treatment.
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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Torie
Oh dang, deenl - sucks that your son was misdiagnosed like that. I wonder if it is more common for boys to be misdiagnosed in that direction (have ED but diagnosed as ASD) and girls the other way?

One thing that struck me about the article was that the author knew she was too thin and hated it. Very different from our Ed-kids who think they are too fat even as they starve to death.

I can't remember who it is here whose kid claims to dislike being so thin (or maybe a few here?). 

If anyone is interested, a lot of articles come up if you google selective eating disorder autism. For example:

http://www.iidc.indiana.edu/pages/mealtime-and-children-on-the-autism-spectrum-beyond-picky-fussy-and-fads

Of course, a few unlucky souls will experience both ASD and ED. Makes sense that ASD would indicate a different approach.

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Sotired
I have an asd boy and an anorexic girl.have to tell you that he shows more flexibility than she does in life.girls do present differently to boys but I just can't see how they diagnosed ed as asd for your boy deenl.asd kids are fussy sure,but they eat.you might have to have a segmented plate or make sure the food isn't touching (meat can't touch rice) but they don't refuse to eat day after day.how on earth did they stuff that one up so badly?i know your boy was eating a little bit but still...
Because asd girls can in a sense 'fake it' until a certain point they tend to get diagnosed later unless severe.until I joined on here I didn't meet anyone who had both an asd child and an anorexic child-and I met quite a few people over the first 12 admissions.so perhaps there is a link,perhaps not.that research is still in its infancy from what I understand.
My d is now claiming she hates being so thin torie.but she still eats ,then throws up.they can say all the right things...
Sotired42
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linefine
Torie wrote:
.

I can't remember who it is here whose kid claims to dislike being so thin (or maybe a few here?). 



It's me, Torie!

Interesting thoughts - will investigate further....
Heather

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always PROTECTS, always TRUSTS, always HOPES, always PERSEVERES. Love never fails.
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deenl
It is a really common thing for highly gifted boys experiencing problems to be misdiagnosed on the autism spectrum. Add in the eating disorder rigidity and social isolation and I was not at all surprised with the diagnosis.

There are an awful lot of common traits between the highly gifted and autistic kids and actually they are often both. So it has come up before and I have my homework done!

What really, really freaked me out [mad][frown][eek][bawl][nono][tounge2] (Not enough emotiocons) was when I very calmly went home and gathered my sources and organised all the relevant facts and presented them respectfully and was told that none of it was relevant and to leave it to the psychiatrists! They have since admitted that their treatment was wrong and caused additional emotional and psychiatric damage to our son (H and I are collateral damage!)

Anyway, rant over. We have mostly good with a few amazing people on the team and we are making progress

Thanks as always for the supportive arena.

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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linefine
Deenl, I think this emphasises how important it is that we are our children's best medical advocates!  You'd think health professionals would wake up to the fact that parents', especially mothers', instincts are a very powerful tool in diagnosis and treatment.  We spent years trying to get a diagnosis for our Aspergers (non-ED) son, who had various therapy which, although not actually detrimental, didn't do a lot to help, and wasted time.  Though it was never said, the writing above the heads of the professionals was so often, "What do you know?  You're only his mother...."

Mmmm - that's why I know so much about him, actually!
Heather

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always PROTECTS, always TRUSTS, always HOPES, always PERSEVERES. Love never fails.
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Torie
Sotired wrote:
My d is now claiming she hates being so thin torie.but she still eats ,then throws up.they can say all the right things...


They sure can! Makes it very confusing for sure. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Sotired
Took me two doctors and three years to get a diagnosis for smallboy.it is now obvious that he has asd,but the struggle to figure it out made getting help much harder.i really pray he never develops an ed as I would have to treat it very differently to a neurotypical child.
Sotired42
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