Young Adults: Between a Rock and a Hard Place
Young adults with anorexia have it hard. Whereas there is effective, validated treatment for children and teenagers, 17 to 25s can all too easily be thrown into a world of adult chronic sufferers, where few approaches have been validated by research. Most adult treatments require the patient to engage with therapy, yet sufferers may be far too underweight and malnourished to be able to do so. Parents can only watch and weep, mindful that they no longer have the legal right to get their child treatment – unless their child’s health seriously deteriorates.
Yet there is another way. Plenty of parents report that family-based treatment for their college-age child works. These may be parents who learned the principles of the approach when their child was younger. As they recognize signs of relapse they bring their son or daughter back home and throw themselves back into feeding and weight gain. They instinctively adapt what they’re doing to make it age-appropriate. Some manage to take charge relatively collaboratively, while others have to resort to more coercive tactics, using access to money, car, job, university, as a bargaining tool. They do this until their son or daughter can safely resume independence.
Given how parents have had to make this up as they go along, it’s great to see that the key names in family-based treatment for anorexia in 12 to 18 year olds (FBT-AN) are working on an adaptation of the approach for 17 to 25s. They are James Lock and Daniel Le Grange, along with Gina Dimitropoulos and Kristen Anderson. They refer to this age group as ‘transition age youth’ and have named the new approach, which they’re trialling in Ontario, as FBT-TAY.
The treatment is still in its early days, but I know some parents will be very keen to make use of the principles I’m about to outline here. For the full report, you’ll need to read Chapter 11 of this family therapy book (which contains other exciting adaptations for particular eating disorder presentations). The book is a must for clinicians (and as a parent I find it amazing too — the price being the only obstacle).
Family Therapy up to 18 Years Old
If your child is 18 or younger and suffering from anorexia, he or she should be getting family therapy as a first line of treatment, because studies show it’s most effective. I don’t mean family therapy as in ‘This dysfunctional bunch needs fixing!’. I mean family therapy as in mobilizing the family to provide treatment at home.
What’s special about family therapy is that it puts parents in charge when the young person is unable to care of their wellbeing. Different therapists do this in different ways (some more effective than others), depending on where they got their training. Here I’m focusing on an evidence-based version for which there is a manual: family-based treatment. Its acronym is FBT-AN, though most people call it FBT or the Maudsley Approach (to avoid confusion, note that the ‘New Maudsley Method’ is something different).
With FBT-AN, there are no individual sessions for patients, there is no waiting for motivation, and no psychotherapy to create insight. Parents are present at all meetings and their task is to take control of their child’s food, get him or her to a healthy weight, and extinguish anorexic behaviors – all without criticism or blame. Many of us parents have seen progress once we have removed choices around what to eat, when to eat, how much to eat and how much to exercise or purge. Our message is not ‘Please try harder to sort yourself out!’ but ‘Trust me. I am making the decisions for now.’
After ten weeks or so, the adolescent can usually eat an appropriate quantity and variety of food and the therapist guides the parents to gradually hand back control. Then the emphasis is on the person getting back into a normal and enjoyable life, creating a virtuous cycle where new habits are formed, fears fade and anorexia loses its grip.
This is a successful treatment for people up to 18 years old, but can it work for young adults?
What’s Different About Young Adults?
Young adults with anorexia come with two types of background. Some have only recently become ill so they are used to considerable independence. Their parents may find it inconceivable to step in and take charge. You can see the problem – FBT doesn’t seem like an obvious way forward.
At the other end of the spectrum, transition youth may be chronic sufferers who have spent their adolescent years in the revolving door of hospital, day units and home. They’ve missed out on normal development and they may be very dependent on their parents, who have often become burnt out and helpless.
Willingness to Have Your Parents Support Your Eating
Central to FBT for transition-age youth (FBT-TAY) is a level of buy-in from the patient. The young adult has to be willing to have their parents support them with eating for as long as they are not able to make changes by themselves. Imagine that. You’re 22, you are in the grip of anorexia, which is an illness that makes your brain react with extreme fear and disgust to eating and weight gain, and you have to find the courage to ask your parents to help you eat and gain weight. This buy-in work is done in individual therapy, after which parents are brought into the conversation.
If your child is young, as mine was when anorexia struck, you know you can’t wait for him or her to want your help, and you can’t expect them to be pleased to receive it. Children and teens in the grip of anorexia are consumed with a drive to restrict every minute of every day. Often they cannot afford to acknowledge any wish to beat the illness, as their mind may give them hell for it. But at university age, sufferers may have moments of awareness of how the illness is messing with their life. This makes collaboration more possible.
Still, you can expect young adults to be ambivalent around recovery, or to flip into wanting to do it all by themselves before they are able. So a big task of a therapist is to work on maintaining the willingness of the young person to collaborate. This is not so crucial with children or younger teens: they expect their parents to take care of them, so although they can put up tremendous resistance their buy-in is implicit.
I marvel at the skill of a therapist in doing the ground work to maintain team work. And in doing it again and again. Should we try this at home if we don’t have access to an FBT-TAY therapist? I know I would, because I remember how meal support turned my daughter around at age 10, and then again at 15. And I also know of many parents who have done this with their university-age child with minimal outside help. My guess is that, with or without a therapist’s involvement, with or without a prior agreement to work as a team, parents are going to meet with resistance at mealtimes, and they will be drawing on their experience and love to make a meal work.
‘Here’s Dinner’: Parents and Young Adults on the Same Team
The way FBT-TAY is being trialled at present, the therapist is constantly working to ensure parents and young person think of themselves as on the same team.
Collaboration means that the young adult is not expected to direct their own recovery (the same as for younger people), but then neither are the parents expected to take sole responsibility for their son or daughter’s eating (whereas with younger teens, parents are given that responsibility). All the same, parents are expected to make a commitment to help their child gain weight and normalize eating. The details of how that is done are worked out collaboratively with the therapist’s help. For instance the family may note that the young person has not been handling meals well or that shopping or cooking are an issue, and all may agree that the parents will take over these tasks. Contrast that with a child or teen in the early part of treatment: parents quickly learn to keep their child out of the kitchen and to support all meals whether their child likes it or not.
With all age groups, parents are empowered to use their expertise on their child in order to stay supportive when their son or daughter puts up resistance or becomes distressed. If the illness has been dragging on for years, therapists have a big role in supporting burnt-out parents. Whether parents are new to anorexia or not, and whatever their child’s age, I can easily guess that they regularly get tired, lose control and wish they could be more calm, more compassionate, and more effective at getting food eaten. At the beginning, getting a loved one with anorexia to eat and gain weight is incredibly hard.
A frequent complaint among parents is that their therapist so wants to empower them to find their own solutions that each parent goes through the unnecessary pain of re-inventing the wheel. Yet experienced mothers and fathers have developed a whole bunch of practical and emotional tools which I reckon work independently of age. Sources which family therapists and parents recommend include my book and videos and online forums FEAST and EDPS.
Team work does not mean parents are included in everything: young adults have some individual sessions with the therapist. With a child or teen, parents are in charge of delivering the treatment so they are always involved. Their presence also helps prevent distorted messages (“The therapist says you give me too much food and that I don’t need to gain any more weight!”). A good clinician will take care to avoid this pitfall. As for siblings being included in sessions, young adults can decide what they prefer, whereas with children and teens the norm is to include the whole family.
The Young Person Tracks Their Eating
During the first phase of treatment, when young adults really need support to eat, they are asked to keep note of what they eat, when they eat, who they’re eating with, and what helped or hindered their eating. Reading this will make many parents of children and teens shudder. Keeping track of food eaten is how our youngsters count calories, obsess, beat themselves up, and resolve to observe even more draconian standards next time. Keeping track is an anorexic behaviour we try to turn them away from. We promote other interests and prompt our children to get on with the good stuff of life.
With FBT-TAY the idea behind food records is for young people to be more aware of eating patterns and of ways to seek help when they are struggling. It is typically done in a way that does not encourage calorie-counting. They are encouraged to tell their parents about what they’re finding difficult. Of course this kind of discussion happens in therapy with younger teens too, but without the record-keeping.
Additional Mental Health Problems
Compared to younger teens, young adults with anorexia are more likely to have co-morbid mental health illnesses such as substance abuse, anxiety disorders, self-injury and suicidality. If these need to be treated simultaneously, FBT clinicians work as a team with therapists specializing in those conditions. With children and teens, the usual rule is to treat the anorexia first, as co-morbids (including obsessive-compulsive disorder (OCD) often fade away with nutrition, with weight gain, and with repeated practice at normal behaviors.
After a few weeks, parents and patient work out how best to gradually hand control back to the young person. When this happens is a collaborative decision, and it may happen sooner than with a child or younger teen, since young adults can’t re-engage with a good life until they get back into studies or work. Their journey to independence, studies, work and intimate relationships may have been disrupted by the length of the illness. FBT for any age group supports patients to get back on track with normal development.
Relapse Prevention Plan
There is an added piece of work with FBT-TAY. Given that young adults should be able to live independently, there is a need for a contract or robust relapse prevention plan. What are the risk factors, what are the signs of relapse, and how will the young person seek help from parents or others? The young person works on this with the therapist first, after which parents are involved.
The FBT manual for adolescents only devotes a little time to planning for future issues such as going to college or work. There isn’t much focus on relapse prevention, presumably because the child or teen is expected to be at home a while longer, and the parents will pick up signs of relapse before things go too far. Besides, as far as we know, most often there is no relapse. Still therapists use their judgement and whatever the patient’s age, they can give plenty of support around planning for relapse prevention.
Should You Use This Approach With Your Young Adult?
What I’ve described here is work in progress. You might like some of the elements I’ve described but not others, and perhaps the creators of FBT-TAY will make changes as they continue their trials. Even with a well-validated method like FBT for adolescents, we don’t know which elements are essential, which are not, and which might even be counter-productive. It’s too big a job to conduct research on each and every variable. One way forward is for therapists and families to be open to trying out changes if an element of the standard protocol is slowing down progress. On the other hand there’s a strong argument for clinicians to not make up their own variations, as when they stray from a validated protocol they may be missing an element that is crucial to success.
The current FBT-TAY study is small and results are not yet in, so nobody knows if this approach is going to work on the majority of young adults or not. I’m optimistic because the method is a variation of something that works well with children and teens and because it comes from an experienced and scientific team.
Given that the expression ‘family therapy’ means different things to different clinicians (and approaches can range from the excellent to the appalling), you can get some reassurance if you use a certified FBT therapist – someone who’s had training from a certified trainer as well as lengthy supervision.
Although family therapy specialized for eating disorders should be the line of treatment for children and adolescents with anorexia, we do have another form of treatment available for the next age group: a special form of cognitive-behavioral therapy for eating disorders (CBT-E). It requires far less parental involvement as it’s an individual therapy where people take charge of their own recovery. It works best with those above a certain weight (BMI of at least 17.5), who don’t have co-existing mental health problems and who are willing to challenge their behaviors. There are no studies directly comparing FBT and CBT so we parents have to weigh up lots of factors to guess what might work best for our child.
Does This Give Therapists More Tools?
I expect that with time, FBT therapists will not do either FBT-AN or FBT-TAY, depending on the patient’s age, but will use their experience in the whole range of interventions to adapt what they do to the needs of each family.
It also makes sense for a treatment centre to be qualified to deliver both family treatment and CBT-E. Clinicians tell me that some patients as young as 15 benefit from CBT-E once FBT has cleared the anorexic behaviors and distorted thinking. Presumably this flexibility in treatment approaches would benefit some young adults too.
How About Other Eating Disorders?
Given that eating disorders like bulimia or binge-eating disorders are very common, it is shocking how little research there is to report on. The study I’m telling you about here is specifically about anorexia, though I imagine it is pretty safe to assume it is relevant to other restricting eating disorders that may not quite fit the official anorexia diagnosis. For bulimia nervosa, FBT-BN is a variant of family-based treatment that is already quite collaborative, as adolescents are likely to have both the motivation and the cognitive ability to get well. Excitingly, the ever-productive Lock, Le Grange et al team have recently released results from a randomised controlled trial comparing this treatment with CBT for bulimia in adolescents.
How About Adults?
This article is about ongoing research for 17 to 25s. Perhaps it will inform developments for adults too, taking into account their own family setup. The general rule is to exercise caution as there is a shortage of research on treatments for adults.
For now, I celebrate that a fantastic form of treatment doesn’t have to be discarded just because someone is over 18. I hope it will prompt health services to coordinate themselves to remove their sharp divides between adolescent and adult service, and to provide evidence-based approaches for all ages.
About The Author:
This article was written by Eva Musby, a respected author on eating disorders, whose daughter suffered from anorexia.
‘Family therapy for transition youth’, Gina Dimitropoulos, James Lock, Daniel Le Grange, Kristen Anderson. Chapter 11 of ‘Family Therapy for Adolescent Eating and Weight Disorders: New Applications‘, edited by Katharine L. Loeb, Daniel Le Grange, James Lock, 2015, Routledge
‘Anorexia and other eating disorders: how to help your child eat well and be well. Practical solutions, compassionate communication tools and emotional support for parents of children and teenagers’ by Eva Musby
‘Help your teenager beat an eating disorder’ by James Lock and Daniel Le Grange
Written – 2015