Pooky has a long history of anorexia and felt like she was constantly walking through the revolving doors of illness and recovery. When hospitalised for anorexia in 2017, she was diagnosed with autism. This led to a radical revision of her treatment, and she finally found herself able to understand and take a grip on the illness that had controlled her for so long. In this talk, Pooky will share some of the lessons learned along the way and provide some ideas for how we might tailor our support for eating disorder patients on the autistic spectrum.
eating disorders
Fi’s journey to understanding her anorexia and autism
In this heartfelt journey of self-discovery, Christine McGuinness uncovers a hidden world of thousands of autistic women who, like her, have been ignored by science and society. Find out more about anorexia and autism.
Children with autism face higher risk of eating disorders
Previous research has found that autism and eating disorders can occur together, as 20-30% of adults with eating disorders have autism, and 3-10% of children and young people with eating disorders.
However, it has not been clear whether autistic traits result from eating disorders or precede them. This new longitudinal study, published in the Journal of Child Psychology and Psychiatry, finds that autistic traits in childhood come before behaviours characteristic of eating disorders, and so could be a risk factor for developing eating disorders.
Lead author Dr Francesca Solmi (UCL Psychiatry) said: “We have found that young children with autistic traits at age seven are more likely than their peers to end up developing eating disorder symptoms in adolescence.
“Most other studies looked at snapshots in time, rather than tracking people over multiple years, so it wasn’t clear whether autism increases the risk of eating disorders, or if symptoms of eating disorder could sometimes resemble autistic traits.”
The study involved 5,381 adolescents who have been participating in longitudinal research from birth as part of the University of Bristol’s Children of the 90s cohort study. The researchers considered whether they had autistic social traits at age 7, 11, 14 and 16, and disordered eating (fasting, purging, prolonged dieting, or binge-eating) at age 14.
The researchers investigated autistic traits reported by the mother, rather than a diagnosis of autism, meaning that the study findings would involve children who do not necessarily have autism, but also would include children with autism who might not have been diagnosed.
In the study group, 11.2% of girls reported at least one disordered eating behaviour within the previous year (7.3% experience them monthly and 3.9% weekly), compared to 3.6% of boys (2.3% monthly and 1.3% weekly).
Adolescents with eating disorders showed higher levels of autistic traits by age seven, suggesting that the autistic traits predated the disordered eating (as eating disorders are very rare at age seven), and therefore might pose a risk factor for eating disorders. Children who displayed higher autistic traits at age seven were 24% more likely to have weekly disordered eating behaviours at age 14. Further analysis confirmed that eating disorders at age 14 did not appear to increase autistic traits by age 16.
While the study did not investigate the reasons behind the relationship, the researchers point out that children with autism may have difficulties with social communication and developing friendships, which could contribute to higher rates of depression and anxiety at young ages. Disordered eating might result from dysfunctional methods of coping with these emotional difficulties.
Other autistic traits, while not included in the specific measure of autistic social traits used, may also be linked to eating disorders, such as rigidity of thinking, inflexible behaviours, unusual sensory processing, and tendencies towards repetitive behaviours.
Co-author Dr William Mandy (UCL Psychology & Language Sciences) said: “The next step is to learn more about why those with autistic traits have a higher risk of developing an eating disorder so we can then design interventions to prevent eating disorders.
“Around a fifth of women presenting with anorexia nervosa have high levels of autistic traits – and there is some evidence that these women benefit the least from current eating disorder treatment models. People with autism and eating disorders may need a different approach towards treatment.”
Senior author Professor Glyn Lewis (UCL Psychiatry) said: “Parents and other carers of children with autism should be aware there is an increased risk of developing eating disorders. Being alert to eating disordered behaviours and seeking help early could be helpful.”
Tom Quinn, eating disorder charity Beat’s director of external affairs, commented: “We welcome this important research identifying the greater risk of eating disorders among those with autism. Early intervention is so important in treating eating disorders and we hope this research will help parents and clinicians spot early signs of an eating disorder more rapidly and ensure those at risk of developing an eating disorder get the help they need. We encourage researchers to examine the results of this study and build on it, including by looking at what support could be given to those with autism to reduce the likelihood of an eating disorder developing.”
Supporting someone with an eating disorder
If a friend or relative has an eating disorder, such as anorexia, bulimia or binge eating, you might want to encourage them to speak to someone about it. You could go with them for support if they want you to.
But there are other things you can do. You’re already doing a great job by finding out how to help them – it shows you care.
You may have noticed your friend has changed. They may no longer go out or want to be included in things.
Keep trying to include them, just like before. Even if they don't join in, they will still like to be asked. It will make them feel valued as a person.
You can also try to build up their self-esteem, perhaps by telling them what a great person they are and how much you appreciate having them as a friend.
Try not to give advice or criticism. Give your time and listen to them. This can be tough when you don't agree with what they say about themselves and what they eat.
Remember, you don't have to know all the answers. Just being there is what's important. This is especially true when it feels like your friend or relative is rejecting your friendship, help and support.
How are eating disorders treated?
Treatment for eating disorders varies around the country. Different types of help may be offered depending on where you live.
Treatment includes dealing with the emotional issues as well as the physical, but this must be done slowly so your friend or relative is able to cope with the changes.
Treatment will involve your friend or relative talking to someone about the emotional difficulties that have led to their eating disorder. It will also explore their physical problems, general health and eating patterns. Help with eating and putting on weight is usually not enough.
The earlier your friend or relative embarks on the treatment programme and the more they engage with it, the better their chances of making a good recovery.
Will they have to go into hospital?
Most people with eating disorders are seen as outpatients. This means they visit the hospital - for example, one day a week. In severe cases, they might need to visit the hospital more often, or be admitted to hospital for more intensive support and treatment (known as inpatient care).
Should I visit them in hospital?
This depends on what your friend wants, how you feel and what the treatment centre allows. Let them know you're thinking of them and would like to visit them. If this is not possible, you can always write to them or call to let them know you're still there to support them.
Can people be forced to get help for eating disorders?
If your friend or relative has lost a lot of weight, they may be in danger of starving themselves and developing serious complications. They may not be able to think clearly and may refuse life-saving treatment.
In these circumstances, their doctor may decide to admit them to hospital for specialist treatment. This can only be done after the doctor has consulted colleagues and they agree with the doctor's decision. This is called being sectioned and it is done under the rules of the Mental Health Act.
Will they be cured when they come home?
Your friend or relative will still need your support. Most people with an eating disorder do recover and learn to use more positive ways of coping.
But recovery from an eating disorder can be very difficult and can take a long time. Part of your friend may want to get better, while the other part might be very scared about giving up the eating disorder. They might think, "I want to get better, but just don't want to gain weight."
They will probably have good days and bad days. During times of stress, the eating difficulties may return. Changing the way people with eating disorders think and feel is never easy and it takes time.
Eating Disorders – What are the signs and symptoms of an eating disorder?
Eating Disorders – What are the signs and symptoms of an eating disorder?
It has been a few years since we took a look at eating disorders here at Patient Talk.
With around one in ten of us suffering from an eating disorder (anorexia , bulimia or binge eating) we felt that it would be a great idea to share this very useful infographic with our readers.
We would very much appreciate it if you would share this information with your friends and family!
Castlewood Treatment Center – Eating Disorder Signs and Symptoms Infographic