Asperger Syndrome (AS) is thought to be the highest functioning form of Autism Spectrum Condition. Females on the Autism Spectrum are underdiagnosed and often come into a clinic with other mental health issues, many labels or diagnoses, some of which include: anxiety disorders, ADHD, sleep disorders, panic disorders, obsessive-compulsive disorder, depression, bi-polar disorder, borderline personality disorder, eating disorders or schizophrenia.
Females on the Spectrum are generally much more social, really good at “faking” it, understanding non-verbal body language, working very hard to “fit in” and “pretending to be normal”.
Women tend to be much more social than men, observe and watch others more in order to learn what to do, learn how to hold their bodies, what to say and when to say it. All of these skills do not come naturally and an enormous amount of energy is put into these skills. Females are generally able to hold it all together during the day and then let it all out at night. At night, the “falling apart” may look like, jumping, screaming, flapping, outbursts or withdrawing into their caves.
Women generally tend to have better empathy and theory of mind skills. However, these theory of mind skills become affected by sensory issues, stressful situations, social situations, processing of verbal information, high levels of anxiety, conflict and/or arguments.
Of those that come into clinics, anorexia nervosa appears to be the most common eating disorder that females (21.7%) on the Spectrum tend to experience (Nichols).
What is the link between eating disorders and Autism Spectrum Conditions (ASC)?
There is a overlap, possibly a genetic link between ASC and AN.
The lifetime prevalence of an eating disorder is 0.9%. ASD is highly over represented in AN (12-32%). Some commonalities between ASC and AN include:
1. Executive function deficits
2. Mood and anxiety disorders
3. Perfectionism
4. Rigidity in behavior and thinking
5. Theory of Mind Deficits
Autism Spectrum Characteristics that increase the risk of developing an eating disorder include:
1. Clumsiness and knowing where one’s body is in space
2. Body awareness issue, distorted image of body in space
3. Limited social insight; difficulty with understanding how others see their body
4. Stomach issues, a feeling of no appetite, bloatedness
5. A lack of sense of being hungry or thirsty
6. Medication side effects (SSRI’s, antipsychotic and associated side effects of weight gain)
7. Sensory processing sensitivities
8. Stress management
9. Transitioning
10. Picky eating
Where does a percentage of almost 1/3 of the population with AN having ASC come from?
51 women over 18 years were evaluated using formal interviews, developmental histories and 32% of those met criteria for ASC, but only 11% of them knew that they had ASC. Their families had no idea that they had ASC. The highest prevalence of personality disorders (OCD) were also present.
In terms of intervention and treatment, a modified treatment schedule is important due to learning difficulties, mental health issues including ASC, a balanced/different course load.
What is desperately needed is a routine global screening program for all females who come into a clinic with an eating disorder. It is critical to know if a client has an ASC or has symptoms of an ASC because the symptoms of ASC do not go away post-treatment. The eating disorder may be alleviated, however the symptoms of the ASC have not. This will help the client, their families and their treatment professionals.
Goals for treatment of an ASC and AN include:
1. Treating the sensory processing condition
2. Improving the rigidity and inflexible thinking processes
3. Improving the range of foods eaten
4. Rigid repetitive behaviors need to be replaced with more functional behaviors
5. Increasing and widening the range of foods eaten
6. Decreasing anxiety levels and improving depression levels
7. Work with the preference for sameness and routine
8. Improving sensory processing issues and desensitizing to aversive foods
Resources
S Baron-Cohen, A Jaffa, S Davies, B Auyeung, C Allison, S Wheelwright (2013)
Do girls with anorexia nervosa have elevated autistic traits?
Gillberg C, Cederlund M, Lamberg K, Zeijlon L: Brief report: “the autism epidemic”.
The registered prevalence of autism in a Swedish urban area. J Autism Dev Disord 2006,
36:429–435.
Eating Problems and Overlap with ADHD and Autism Spectrum Disorders in a Nationwide Twin Study of 9- and 12-Year-Old Children
The sociocommunicative deficit subgroup in anorexia nervosa: autism spectrum disorders and neurocognition in a community-based, longitudinal study
CAVEAT: My research is focused on females, due to the lack of research and information on the female profile
Tania Marshall 2013. All rights reserved.
Tania Marshall©. 2013. All rights reserved. Duplication in
whole or part is explicitly forbidden. Thank you.
I think this may be due to the age of women at the time of diagnosis and also the relative acceptability of anorexia as a behaviour in our society. I am much happier to disclose that I have been anorexic than that I binge-eat. Starving unfortunately carries a kind of kudos. Being out of control is the other side of the same coin, but it carries shame. My personal expience is that ‘pure’ anorexia morphed into more chaotic eating patterns. This seems to be so for other people.
What about weight issues without an eating disorder?
Thank you so much for writing this! I am so glad that this is coming into the light because I struggle with both. Hopefully people will continue to learn more about this!
Thank you Rose and I hope so too 🙂
I would just like to add that women and girls don’t have to be skinny to display anorexia symptoms. I am fat but I tend to have distorted body image, rigid and picky eating, stomach issues, etc. I usually starve myself all day then eat one large meal at night. It’s usually a very narrow range of food. I have Aspergers. -Kashi-
I remember as a child I rarely got hungry and so went days without eating without realizing it. I was never diagnosed with an eating disorder because I knew I was underweight and didn’t want to be, I just couldn’t force myself to eat food I didn’t like and rarely felt hungry. It’s really difficult to make yourself eat something you don’t like when you aren’t hungry either. I have celiac disease, which my gastroenterologist says is probably the root cause.
I’ve found It usually takes me about a year to start liking a new food–far longer than the 12 introductions people say. I think it’s because I have to overcome the sensory components (overwhelmed by the taste and/or aversion to the texture). It takes me that long to get used to new sensory things like sleeping under a blanket with a different texture. I’d recommend parents encourage their spectrum kids to sample a food many more times than the recommended 12 before giving up.
I would also point out that women and girls with ASD are more likely (than men and boys with ASD) to be highly interested in fitting in socially. Given our society’s confusing social messages about weight, it is *easy* to see how a young woman with ASD might restrict eating in an attempt to gain social acceptance, and how that attempt might even be perceived as or actually successful in the sense that people might admire her for being thin. I’ve seen that dynamic play out in the cases of women with ASD and eating disorders I’ve seen personally.
I am going through the process of getting a formal AS diagnosis (well, at least, contemplating it, at this point), and I have been labelled (within the last 13 years): bipolar (currently medicated), Borderline, schizophrenic. I legitimately have ADHD, panic disorder with agoraphobia (and all the anxiety that comes with it)–these I am medicated for as well. I have also been diagnosed ED-NOS (Eating Disorder-Not Otherwise Specified). Here’s how it was explained to me: “You have an eating disorder….you exhibit BOTH signs of anorexia AND bulimia, but not enough of either to be either one individually. You’re a combination of both.” Yes, I have been hospitalized for it before (and the other conditions, too).
I start researching Asperger’s, for myself (thinking back to when I was “diagnosed” with Borderline…I was told, “Well, you don’t actually have ENOUGH traits to be Borderline, but nothing else explains your behaviour”, so a therapist made up an instance of childhood abuse in my life by someone very close to me–and I was so drugged, I believed it–to back up HIS diagnosis, and no one ever questioned it, except me…and of course, no one listened, until my current treatment team), and suddenly realised, my “eating disorder” isn’t SO MUCH of one (there are some elements that are….I am very focused on my weight and body image; what I think I look like, and how I actually look do NOT match) after all. I use food as a means of control (the more out of control and chaotic my life is, the more I control my food intake. There are, legitimately, foods I cannot have, but how strict about that I am depends. I can be REALLY strict, or I can do very little, and still be healthy. Well, my life is totally out of control, so I am using these new dietary restrictions to try and regain control of my life…or at least part of it), and I also have SPD, so I have gustatory issues (these last two issues my husband doesn’t get AT ALL.) We get into almost arguments cos I can’t stand the taste and consistency of pork, so I refuse to eat it–and he has two children, 9 and 11–and he doesn’t want them to see me refusing food because “I don’t like it”. HE thinks I am just picky; I know the truth.
Thanks, Tania, for all of your work, and SPECIFICALLY for addressing this issue!
when you are constantly worried about every feeling, every perception, every problem (economic, social justice, political) when you feel like you’ve become a lightening rod for every feeling and every problem others have, when you hear a terrible story and feel it so deeply in the stomach that it feels as though you have physically been punched – the ritual, the obsession and the thought processes that come with starvation, feel like such a relief. Everything kind of falls into line, the anxiety lessons, and for the first time ever, you are thinking ONLY of yourself…That’s the difference with just “being a picky eater” and being anorexic.
My daughter has not been diagnosed but I definitely think she has Asperger’s
She is a Vegan, she like to control her eating and eating habits. she’s very strike with herself but I have to say looks well on it. Eating is a big part of her life and she actually looks good on it.
She was very chuffed when while she was at collage she was able to give blood
Two of my sons are on the spectrum and I was putting a lot of effort into finding out about autism to try and understand how they saw the world. I was anorexic in my teens and when I read an article suggesting a link I went on a google-fest and found your blog. Reading your posts and some work by female Aspiens has made me realise that I am probably on the spectrum (or at least Aspie-Lite). Although outwardly I recovered from the anorexia, in that I put on weight and people stopped worrying about me, I did not feel any better on the inside. Too much is focused on fattening the anorexic up, and really this just displaces the problem for a while. This probably goes for anorexics who are not Aspiens, but I am particularly thinking of those on the spectrum. Certainly none of the treatment I received for anorexia really made any sense to me or spoke to who I was. This is such important work and I think in a few years it will be mainstream thinking.
Amy, you are right, eating disorders in neurotypicals and eating disorders individuals in people with Autism/Aspergers have different feature, causes and some similar too, but they require DIFFERENT treatment. Thank-you for your message! Take care
Hi! I’m asperger woman 32 years old from Italy. Happy to see this article, this web site, this person that you are Tania Marshall!!
Thank you so much!! I hope everything will be better for us and future aspie.
And I hope also for more information and work on it also in my country….here asperger is still little known…about me, sometimes I use free time with translations of yours and others articles that speak asperger expecially for female!!
Thank-you Elisa for your kind words. You are so welcome!!! Many countries have asked me if they can translate my blogs into their languages and am most happy to get this information out to every country, as long as I am sourced as the author. Much more information coming!
Hello Tania,
I would like to mail with you concerning Asperger girls/women issues.
Is this okay?
Hi Clover, I am physically unable to reply to each and every email now, unless it is in a scheduled appointment. I hope you understand but I do see 28 adults, children, or more families a week and I am now doing mu Doctoral. Please email me if you would like an appointment
Dear Tania,
Is aspergers progressive or developmental (and is there any difference between these two terms and if so what)? I have heard of AS disorders being called developmental but am unsure what exactly this means. Also, why is it in particular that girls don’t “seem” autistic (if you know what I mean) for so long and, as you’ve put it, “go under the radar”?
Thank you for your blog and all the information it offers! It is a great support.
This is me too. Anorexic when younger. I don’t get hungry. When I am stressed I stop eating. My stomach can feel bloated. I can go for a while without eating. I can identify with everything in this post.
Thank you for this blog. My 12yo daughter has had anorexia for a year, during which time she was hospitalized on complete bed rest and fed 24/7 through an NG tube. After almost a year on the Maudsley FBT programme, during which we managed to rebuild her weight to 95% of ideal body weight, her rigidity and anxiety should have decreased. They have not. She has most of the Asperger’s characteristics and her medical team is looking towards a diagnosis. I feel that if we can control the anxiety and rigidity, she can win her battle with anorexia and start to live again. Respiradol and Olanzipine at being discussed. Can you shed any light on our prospects?
Desperate mum