All posts by Frances Coleman-Williams

Lady eating grapes

Eating disorders and autism–what’s the link?

From the outside looking in, perhaps eating disorders and autism couldn’t look more different. Supposedly, people with autism aren’t attuned to their emotions, whereas people with eating disorders are highly sensitive and turn to food/eating behaviours to cope. But an eminent psychiatrist says:

Strip off the misconceptions, and the two conditions are far more similar than anyone believed.

Janet Treasure, director, eating disorders, Maudsley Hospital, London

It is therefore unsurprising that research has found that in groups of people with long standing eating disorders more than 20% had undiagnosed autism spectrum disorder.

Similarities include fixating on small details, with difficulty seeing the bigger picture and the need for rules, routines and rituals.

On a personal note, well before I was making sense of my life through the lens of autism, it was clear my eating disordered behaviours began as I struggled with changes at puberty. I couldn’t cope with hormones causing bodily and emotional changes that I didn’t understand. I remember specifically thinking I wanted to try and keep everything the same.

An autistic person may develop an eating disorder due to the following:

  • Not being able to sense hunger, this is due to impaired interception.
  • Sensory problems with food e.g. texture, smell, taste, leading to limitations in food tolerances.
  • An intense/restricted interest of counting calories or other specific food related activities – these routine and rules become very difficult to change.
  • High levels of anxiety.
  • Unintentional lying related to food intake or exercise activities.

This could be the perfect storm for developing a restrictive eating disorder (anorexia) but some autistic people could turn towards food and binging/purging behaviours in order to manage their emotions.

When compared to neurotypical counterparts research shows that weight and body shape are less important for autistic people.

Clinicians have managed patients of this kind (girls and women on the spectrum with/without a diagnosis) by increasing therapy that wasn’t working, but they’re now seeing that they have different recovery needs due to their autism:

“We always had this subset of patients who didn’t do very well in group therapy, and our response was, ‘Well, let’s put them in more groups,’ It just alienated them even more; now we know better. Providing a small range of food choices, as well as clarifying rules and expectations, also tends to help people with autism and eating disorders recover successfully.

Craig Johnson, Clinical Director, Eating Recovery Centre, Denver

I, too, have often heard clinicians make similar comments. I can understand the thought process, if patients struggle with group therapy, it can be an incredibly helpful process; noticing and understanding one’s impact on others is important and powerful in society as a whole.

However, an autistic person, struggling with an eating disorder, isn’t struggling with their relationships with others, they’re struggling with understanding internal processes, emotions and, the need for routine and the resistance to change isn’t just a preference it’s a neurotype.

It’s all too common for women to get struck in the mental health system, to be diagnosed with depression, bi-polar affective disorder, borderline personality disorder or eating disorders and only in their 20s, 30s or 40s find out that they actually have autism.

For some, when they receive a diagnosis of autism and appropriate support, their eating disorder disappears, read about Savannah’s experience here. For others, understanding that their “autistic brain [is] obsessing about numbers, patterns and sensations” helps them have a better relationship with themselves, read about Carrie’s experience here.

Therapy

For me, autism has helped me make sense of so much! My anorexia was a desperate attempt to keep things the same, it was a way to (try and) escape a very confusing world where I don’t understand how to fit in and it’s now making sense as to why it was so hard for me to recovery (every time I did, my mental wellbeing would deteriorate) and why I needed so much personal therapy from someone who threw the rule book out the window.

The sad fact is that anorexia has the highest mortality rate, 1/5 people with anorexia will die early, from suicide or malnutrition. However, there is hope, by raising awareness of autism, management of the eating disorder is possible and could set someone free. Combination of specialist therapy and medication to aid with the high levels of anxiety will most likely be required.

The art of camouflage and gender differences in autism–late diagnosis

This blog follows on from previous blogs I’ve published on autism that can be found here and here.

Many years ago I noticed that I was able to behave like a chameleon, I didn’t know if it was a particularly good or bad thing to do, I just knew I was astonishingly good at it. I could go from one situation to the next and just blend in, people would hardly notice I was there; I would spend a short time observing people so that I could work out what was needed in the new situation then I would do it.

This blog highlights the traits, usually seen in females, without cognitive impairment (IQ>70). What I’m about to explain may also be seen in males, this may lead to them receiving a late or no diagnosis, it’s just seen more often in females.

Until recently autism has been viewed as a male disorder and even, for a short period an “extreme male brain” theory was used to understand the disorder. However, as more understanding is developed, research is finding that autistic females tend to be able to camouflage their symptoms of autism and use compensatory behaviours that mask their social challenges.

Research has shown that there are a number of first impressions that people with ASD often present that can be negative. For example, atypical vocal prosody, unusual use of co-speech gestures, atypical facial expressivity, and general “awkwardness”. However, research has shown that to naïve individuals, during a short “get-to-known-you”, conversation, females with or without ASD gave a similar first impression where as males with ASD were not able to mask their symptoms. In this research the autistic females were matched to autistic males with similar ADOS-2 (Autism Diagnostic Observation Schedule) calibrated severity scores i.e. when assessed by expert clinicians their autism traits were reproducible.

As the autistic child grows up, even if they attempt to echo or mimic behaviours other people do, they lack the understanding to inform the social interactions. I remember doing my utmost to try to “blend in” and get it as right as I could, I just had a sense people would like me more if I was the same as them and so I just laughed and nodded along even when I didn’t understand…

Research shows that children in the playground tend to split into gender groups. Typically developing girls play socially together giving girls with autism opportunities to play on the periphery and they’re seen to weave in and out “practicing” masking their autism (even though this is unconscious at the time). Typically developing boys would play organised games, where as boys on the spectrum would spend time on their own.

In an assessment when asked “how do you manage eye contact?” A young lady answered:

Well, I look at them and then when they look away, I look away and wait a couple of seconds and then look back for a few seconds. You have to make sure you don’t look at them for too long, nor look away for too long and count a few seconds each time.

To most people, her social interaction when it came to eye contact would have looked “normal” but she had no idea that eye contact was meant to feel natural. She was treating it as though it was a mathematical puzzle to be figured out. She was managing all her social interactions as thought they were puzzles and she was exhausted!

I find eye contact horribly awkward but I worked out a long time ago that I can manage it more comfortably (i.e. it’s slightly less painful) when the other person is talking) so I tend to look away while I’m talking and look back when the other person is talking. That way, I’m doing some eye contact but I’m not forcing myself to do it all the time… a compromise I hope no one notices…!

…In fact, I don’t really understand why it’s considered normal to stare at someone’s eyeballs…

John Elder Robison

A prominent feature seen in some people with autism is an intense special interest. Firstly, this isn’t needed to meet the diagnostic criteria for autism (see here) so it may not be present at all. Secondly, females may have an intense, age appropriate feminine special interest that is overlooked, for example, if a teenage girl said she was into make-up, this could be seen as fairly standard. But if she’s categorised every brand of eye-shadow, foundation, blusher and bronzer by ingredients and has cross-referenced all the shades of her favourite brands in excel, I think you’d see this isn’t just a standard interest in make-up.

Females who spend time watching other females in order to mask their social awkwardness may be aware that they’re different but may find it very difficult to manage their differences all the time. I’ve always felt like I’m one step behind everyone else, desperately peddling to catch up but never quiet making it and I’ve never known why!

Due to the way society traditionally sees males and females—if a female has a shy, quiet, anxious nature and has a desire to stick to routine it’s more likely to be overlooked and accepted as their natural character. If a female struggles with loud sounds or bright lights, it’s accepted that they’re simply more sensitive. If a male has similar struggles, they are more likely to be pathologised. Females are more likely to be tolerated as quirky, there may be less pressure on them to perform academically. Of course, these are generalisations and don’t apply to everyone but small adjustments can traditionally enable females with ASD to “hide”.

Stimming is repetitive body movement or movement of objects (lining up cars/pencils). This is, again, not necessary for a diagnosis of autism (see here) so may not be present, but it may look different in females because it may be more subtle. Females are more likely to turn their behaviours inwards. Females may do small movements with their fingers or bite the inside of their cheeks rather than make large rocking movements that impact other people. For example, I have a compulsion to click pens but I know that would impact other people so I press the top so to the point of feeling the springy movement over and over but the sound doesn’t annoy the people around me. There’s scant research exploring these behaviours, they’re not just limited to autism.

All of these features added together, it’s not surprising females are growing up without a diagnosis. Females are even having to ask to be assessed by experts who understand that female autism presents differently. But the landscape is changing and I’m just trying to do my bit to spread understanding.

Blending in, masking, camouflaging, hiding our autistic traits comes at a price. Initially, it simply feels exhausting but as well as the late diagnosis, females with autism can also feel as though they don’t know who they are; if they’re covering up their traits, who would they be if they let loose?! Females can also pay with their mental health, it’s very common for undiagnosed females for be mis-diagnosed with personality disorders but also have co-morbid depression, anxiety and eating disorders.

However, with the relief of a diagnosis comes acceptance and liberation, a feeling that it’s ok to be different! A sense of belonging to a community of people who have the same struggles. I’m glad I’m able to blend in when I need to, it’s got my jobs and I’m able to socialise to some degree, I consider myself fortunate to have (to some extent!) these skills. I’m now enjoying having the freedom to be myself a little bit more, but I’m still able “to chameleon” if I need to!

What is autism? The diagnostic criteria explained

When you think about autism, you may, stereotypically, think of a boy, probably non-verbal, who may become violent at times. There is, however, also, the saying “when you’ve met 1 person with autism, you’ve met 1 person with autism”. That’s because Autism Spectrum Disorder (ASD) is so wide varying in how each individual experiences it.

The DSM V is the official American manual for assessment and diagnosis for mental disorders. ‘5’ refers to the number of iterations it has gone through to arrive at the current recommendations for the criteria needed in order to officially diagnose someone with each particular disorder.

Autism spectrum disorder (ASD) is not a mental disorder, it is a neurodevelopmental disorder, some prefer the word condition. The medical model of ASD speaks about the individual’s deficits (see each criterion below)—in future blogs I’m planning to address why this may help to diagnose someone but may be unhelpful when trying to live on the spectrum.

It is interesting to note that Asperger’s Syndrome was a separate diagnosis in the DSM IV, however inconsistencies were found between different diagnosticians—therefore, in the DSM V there’s one umbrella term. (Some people who were diagnosed with Asperger’s still use the term, they are not wrong to use it but it is not used for people diagnosed today.)

DSM V—Autism Spectrum Disorder

Criterion A—Persistent deficits in social communication and social interaction across contexts, manifest by 3 of 3 symptoms.

This means the individual will have difficulties making connections with people socially in all environments, with friends, family and strangers. All of the following 3 criteria have to be present:

A1. Social initiation and response

Deficits in social‐emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction.

This covers a whole range of struggles; some people with autism do not speak while others may not understand how to start or end conversations. Other examples include: not sharing in another’s achievements, one sided conversations and difficulty sharing in social games.

A2. Non-verbal communication

Deficits in non-verbal communicative behaviors used for social interaction.

This represents the individuals difficulty with eye contact, understanding body language or gestures. Some individuals may talk with an unusual pitch, intonation, rate or volume of voice while others may not use facial expressions or struggle to coordinate verbal and non-verbal communication.

A3. Social awareness and insights + the broader concepts of social interactions

Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers).

Individuals have difficulty adjusting to different social contexts e.g. inappropriate questioning, laughing or limited understanding about other’s needs. Difficulties sharing imaginative play and making friends. Children may prefer to play with people much older or younger than themselves or to spend time on their own. Some individuals may appear to have a complete lack of interest in other people.

Criterion B—Restricted, repetitive patterns of behavior, interests, or activities, at least 2 of 4 symptoms:

B1. Atypical speech and body movements

Stereotyped or repetitive speech, motor movements, or use of objects.

Examples vary between individuals but could include: unusual speech such as pedantic, jargon, echolalia or neologisms; repetitive hand movements such as flapping or clapping, whole body movements, facial movements (grimacing) or excessive teeth grinding.

B2. Rituals and resistance to change

Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change.

While this may look like a need for control, individuals struggle with a need for routine and struggle with change. Even thinking patterns can be rigid such that there’s an inability to understand humour. Extreme distress will be observed if change is forced upon the individuals without any support.

B3. Preoccupations with objects or topics

Highly restricted, fixated interests that are abnormal in intensity or focus.

Overly perfectionist views with preoccupation in unusual inanimate objects or non-relevant, non-functioning parts of objects. Individuals may have incredibly interest in specific subjects—on face value it may not seem unusual until the depth of the interest is understood.

B4. Atypical sensory behaviours

Hyper‐or hypo‐reactivity to sensory input or unusual interest in sensory aspects of environment.

Individuals may find any kind of sensory input overwhelming or may not respond to it at all. An apparent indifference to pain/heat/cold may be observed. This may mean that they explore objects in unusual ways and seek out overt sensory input.

Criterion C—Symptoms must be present in early childhood

But may not become fully manifest until social demands exceed limited capacities.

Criterion D—Symptoms together limit and impair everyday functioning.

Although the individual may have learnt to mask from a young age, thus the impairment may appear subtle to the observer, within the individual, the impact of their symptoms will be profound.

Additional symptoms and co-morbid conditions

People diagnosed with autism may experience all sorts of other symptoms/difficulties. These many be related to their autism or may be a co-morbid condition. Symptoms that may be experienced/observed include (but certainly not limited to):

  • Shutdowns – someone who can usually speak/communicate well, becomes uncommunicative/has trouble communicating due to excessive stress linked to all of traits A, B2 and B4.
  • Meltdowns – each individual will experience these differently, from excessive crying to extreme outbursts of anger/aggression. In children, this may look like tantrums; adults may feel them coming on and try desperately to suppress them for as long as possible (weeks-months sometimes) but they are a sign of extreme overwhelm and are particularly linked to traits B2 and B4 above.
  • High levels of anxiety – due to the world being set up for neurotypicals, it can be incredibly daunting for an autistic to attempt navigation. When communication doesn’t go to plan, sensations are overwhelming or routines are disrupted, feelings can become hard to bear.
  • Taking longer to process events/trauma – a particular event may not cause any problems for a neurotypical person but an autistic individual may struggle to process what has happened. This is linked to traits B4 and the A above, no matter how well the autistic person works to overcome their difficulties, managing the sensory input and processing it will always be difficult.
  • Difficulties managing physical health problems – this may be due to an inability to recognise signals from the body or having a higher or lower pain tolerance than the neurotypical population. This can lead to individuals becoming very ill before seeking help or taking longer to recover from illnesses. Some individuals with autism struggle with knowing when their body is hungry, satiated or when they need the toilet.
  • Loneliness – people with autism still have the same human needs to be loved and to love but communicate in a different way. They may not know that their desires stem from standard human instincts and require support.
  • Self-harm and suicidal behaviour – due to severe stress individuals with autism can be driven to extremely dangerous coping mechanisms. See previous blog in “mental health for all”.

Co-morbid conditions include:

  • Learning Disability
  • Depression
  • Anxiety
  • Eating Disorders
  • Attention Deficit Hyperactive Disorder
  • Conduct Disorder
  • Personality Disorder

Please look out for future blogs when I’ll be explaining more about my experience, including why females are more likely to be diagnosed later than males, whether a formal diagnosis is necessary for support and why there’s such a link between eating disorders and autism.