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Anorexia on the Spectrum

By Ellen Ewing, F.E.A.S.T. Volunteer

My husband and I sat uncomfortably in the therapist’s comforting garret office with all the colorful, spangled pillows and fidget toys (which we had helped replenish since my daughter had broken practically every one). Our daughter was a year in to strong recovery from anorexia nervosa; we really didn’t have any issues with her eating or exhibiting behaviors. She herself stated she no longer had restricting thoughts and was so “over that.” She had gained and kept gaining weight; she’d started to grow and started her period for the first time at almost 17. Our check-ins with her eating disorder therapist and indeed the sessions she had with my daughter had never been much about direct eating disorder recovery issues (getting her to eat, dealing with distress over eating, addressing body image, etc.), but seemed to focus more on managing social interactions. After working with our daughter for almost a year, the therapist wanted to tell us she thought there was something else going on here. She suspected our daughter was on the autism spectrum.

Our daughter has always been quirky. She had friends but didn’t enjoy hanging out with groups of girls like most pre-teens. She had stopped going to and having sleepovers when pretty young because the other girls never slept; I remember one time when she insisted her friends leave our house at 11 because it was way past her 9:30 bedtime and they were not going to sleep! Our daughter’s therapist, while not specializing in autism, knew enough to ask some good questions about her behavior when she was very young to establish a pattern of thought rigidity, sensory overload breakdowns and challenges reading emotions and social cues.

After several weeks of multiple tests, at the very end of her junior year in high school, we got the results back. Our daughter was diagnosed with Level 1 ASD (Autism Spectrum Disorder), without intellectual or verbal impairment. (The older diagnosis for this level ASD is the likely more familiar Asperger’s Syndrome.) I remember reading our daughter a description of ASD before we got the results back and her saying, “Mom, this is what I have; it explains so much of what I struggled with especially starting in middle school.”

Autism is still frequently missed in girls, who have a much later average diagnosis age than boys, due to different presentation and girls’ abilities to “mask.” My daughter told the psychiatrist who evaluated her for ASD that she figured out when very young that people want you to look them in the eyes; she was always uncomfortable with this and so worked out that she could look at their chin or forehead and they wouldn’t know the difference.

There appears to be a higher than average instance of kids, especially girls, who have both anorexia nervosa (AN) and ASD; some research even estimates up to 20% although others indicate somewhere between 6-10%. There are also studies that identify many people with EDs exhibit some of the same black and white thinking, inability to identify emotions, etc. that those with ASD show. Regardless of what the overlap ends up being, as I look back on her illness, I think the ASD and the AN interacted with each other in some interesting and unique ways. The anxiety and depression she felt by feeling different than the other girls in middle school was likely a trigger to the AN. As she got deeper into the eating disorder, the emotional numbness caused by the malnutrition revealed itself to be a great coping mechanism for the ASD (except that it was killing her!). Group therapy and DBT, as well as CBT skills, didn’t really work with her. The lights and sounds and stress from the treatment center certainly added to the trauma she picked up there. (This trauma was effectively treated with EMDR about 6 months after she was back home.)

Finally, our daughter’s recovery was rather short by many standards. She was in strong recovery a year or so after diagnosis and then two years during which she finalized the eating disorder recovery and started learning how to manage the ASD. She went off to college on schedule this fall.  I’ve started to wonder if her ASD may have actually helped her recovery quicker. Recently, I was reading some research on ASD and AN. A phrase in this research paper caught my eye, “people with autism who have anorexia nervosa may exhibit higher levels of treatment adherence compared with those with anorexia nervosa.” Remember the friends she sent home because they weren’t adhering to her bed timeline? I wonder if that singular focus got turned on her eating disorder to kick it out of the house early too.

I do believe there are kids with eating disorders where the ASD causes treatment to be less successful and strings out recovery. There is still much to be learned about this relationship, just a few of which are listed below:

  • Is ASD part of eating disorder causation? Does having ASD put you at higher risk for AN? Or do ASD traits lend themselves to development of eating disorders? Or is there some other genetic link?
  • How does treatment need to be adapted to better serve those with ASD?
  • Are there protective elements of ASD for those with eating disorders? Are there some ASD traits that can be harnessed to improve treatment outcomes?

My hope is that we can use stories like my daughter’s to advance the need for further research into this fascinating connection.

For further reading:

I found this article and this research paper particularly useful in thinking about eating disorders and autism.

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  1. Kari Hignett

    Thank you so much for publishing this – I have a daughter who was diagnosed with ASD and AN at 7yrs old , with the psychiatrists explanation that the AN was “backpacking” along with the ASD traits-there were her own relentless rules around not eating/ over exercising that she felt compelled to follow because of her rigidity and black and white thinking. It really gives me hope to read that perhaps these ASD traits can be of benefit in overcoming the anorexia, and I really appreciate you sharing your experience (&the references). Thank you .

  2. Jacqui Mann UK

    There is some work by B Lask, I Frampton et al that proves the link too between anorexia and autism and again suggesting that 20% of anorexia sufferers likely to be autistic . They were looking at the insula, part of brain under MRI.
    I’d say my daughter fits that group, and once put on tment programme took to recovery no problem age12yrs
    Sadly there was never follow up though with stable school structures and routines she was fine. But…. m
    She relapsed starting Uni age 19, in a new city(leaving home). Looking back that makes sense.
    Sadly access to care is problematic in UK and it took nearly a year for her to get help by which time she was critically ill again with ED and physically suffering complications.
    There wasn’t appropriate tment (and this time recovery was very slow and I would say incomplete tment stopped age 22, still low weight very brittle/fragile emotionally.
    I think autistic traits have always been recognisable and her rigid thinking, poor emotional function, perfectionism resulted in resorting to OCD and veganism as coping mechanisms.
    She has been so keen to be well and not defined by ED or she’s no insight to herself to see that she masks traits, creates a coping persona, she is intelligent and presents well.
    Except I get the meltdowns the panic, the overthinking anxiety, the emotional exhaustion……she went on to do a masters and qualified last year as Speech and Language therapist. I am a proud mum but also a worried and exhausted mum as her 2 years qualifying was a draining emotional roller coaster. She was reluctant to take time out then to try and address her mental health issues…..the answer for her was get started on work!! She was driven and reluctant to dwell on issues.
    We are a year in to a new job, new flat, Covid 19 and she is a wreck. Severe anxiety and now depression, barely managing to work, or hold it together. I feel like a 24hr crisis line. For the 1st time she has reflected her favourite patients are the autistic teenagers as she feels she ‘gets them’.
    And she has gone to Gp who has stuck her on SSRI meds, and she is paying for weekly private psychotherapy.
    I worry people have homed in on the anxiety/depression and will again miss the underlying reason she finds ‘life a challenge.
    Its great to see her trying, but exasperating that its never quite tackled, sad as a mum that she hasn’t had a 1st love, expressed delight at mad times with friends, even as mum/ daughter I am her crutch and safety net but she has said I’ve seen too much of the bad times for us to have a fun/normal relationship.
    That cut me. So life remains intense for her and day to day difficult and no recognition of autistic elements. I do feel a diagnosis might help her understand herself better to be less negative on herself, may lead to acceptance of how living life to suit traits could open it up for her, help manage a work/life balance in which she can be less anxious and find some pleasure.
    As a mum I can but observe, offer observations, coach and steer a little, advise where safe to do so. I do find it tough but can’t not be there for her.
    I wish there was more family collaboration, I hold the continuity of her history, her care, have the fullest picture of her over time. (Coincidentally I have a health/nursing background and at times have tried to stand back, partly to cope). Id love to input into a holistic approach to her to really find help for her to recover and find a way of life that suits her and hopefully happiness.

    • Bella

      Jacqui, your story sounds so similar to mine, is there any way I can contact you? Sounds like you are doing an amazing job with incredible strength x

  3. Rose Starecheski

    This resonates with me (I’ve wondered about my daughter but she has not been officially diagnosed). What strikes me though is your therapist was able to focus on this aspect. That is constantly my daughter’s complaint; she does not have body dysmorphia and wants to talk about her anxiety, social issues and “everyone keeps focusing on food and eating. I would be better off if someone talked to me about the rest of it.” And I’m told by everyone that we can’t focus on the anxiety, OCD, etc until she is able to “recover” from the eating disorder. Her OCD and rigidity is the reason for the eating disorder.

  4. Diane

    This is interesting and helpful information. I’ve read about girls with ASD being less likely to be diagnosed, in fact BBC had a very interesting article a few years ago about women with ASD who were diagnosed in adulthood. One of my girls (not the one who is now recovered from anorexia) sounds so much like your daughter, Ellen. I wonder about the genetic connection, because I’ve heard of a number of families, even on this forum, who have a child struggling with anorexia and another who as ASD. I’m so glad that your daughter is doing well, Ellen!

  5. Deborah

    Thank you for sharing Ellen and starting this chain.
    Jacqui your story resonates so much with our own experiences with our young adult daughter. She has had AN in past and although mostly recovered there are certainly lingering issues
    Living away from home for first time this year whilst completing Masters has challenged her and us and like your daughter she is paying for weekly psychotherapy sessions.
    I too wish there was “family collaboration” and feel very locked out as have her full history to share with the health professionals.
    Unfortunately our daughter preferred to rely too heavily on her few very close friends and over the last 12 months they have distanced themselves.
    She is desperately lonely for friends and this causes great sadness for us.
    As parents we can only be there for support and help when asked.
    It is heartbreaking.

  6. C

    Add Basal Ganglia Encephalitis to the list of things likely to be interconnected and the subject of intense research … someday I think they’ll all be found to be immune-mediated issues with brain inflammation or autoimmunity as major contributors. It seems like someday, maybe even within our kids’ lifetimes, they will make strides in individualized-medicine and be able to turn on or off the genes or immune system parts at play to help make life more normal, faster, for people with the genetic propensity to suffer from these things. It is stunning the things science has figured out relating just to the immune system, not to mention the gut/brain connection, just since my kids were born in 2006.

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