Category Archives: Mental health

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.

World Mental Health Day–Mental Health for All

The theme for this year’s World Mental Health Day, October 10th 2020 is “Mental Health for All”. This is a great subject for this year as so many people are struggling with the current pandemic for all sorts of reasons.

The subject means something special for me as I’ve spent my life feeling like I’m different, I don’t fit in, I don’t know how to do the stuff other people do so easily and I don’t know why.

A little while ago, we realised why – I’m autistic.

This may come as a surprise to some who know me, or it may make perfect sense to others! To me, it’s really helped things fall into place.

Previous to this, lots of things didn’t make sense, I’d had long periods of mental illness and while I’d managed to carve a recovered life (with lots of support, medication and various therapies) I still really struggled with general life and it was difficult to understand why. Below are just a few examples of things I struggle with that are now explained by autistic traits. It’s important to remember that this is my experience and that this will not be typical for everyone on the spectrum.

  • I’m incredibly sensitive to sounds but had been putting this down to being “highly sensitive” and an extreme introvert. These labels helped to some extent but didn’t quite explain why I would find a noisy environment completely exhausting. My sense of smell and touch are also extraordinarily sensitive.
  • I have a very small number of close friends because I struggle to make and keep friends. A lot of people see a more “socially acceptable version” of me because I feel they would judge the real me.
  • I’m easy overwhelmed by misunderstandings and confused by unexpected situations. I know I have intelligence but sometimes feel I lack common sense–this isn’t true, it’s just how it feels. It’s been awful not knowing why I can’t see things the way other do.
  • Things sometimes get stuck on a loop in my head. Hyper-focus and an eye for detail can be seen as a positive thing but it’s felt negative when other people can move on. It’s not that I’m deliberately holding a grudge, it’s that things affect me more deeply than they do other people.Stone brain breaking apart with cogs inside
  • I’ve always understood that there are unwritten social rules but I’ve struggled to know what they are. As I’ve grown up I’ve managed to hide the fact that I don’t understand and I “laugh along” but I’m hiding (masking) a huge amount of confusion and anxiety.

As I came to terms with the diagnosis, I realised I’m actually not odd, weird or wrong, I’m just neurodivergent.

All this time, I’ve been desperately trying to be “normal” and I’ve suddenly discovered that I am!

However, learning that I’m on the spectrum has been a mixed blessing!

The downside of the diagnosis is that it comes with discrimination and stigma.

[People with] autism spectrum disorder…are more likely to experience mental health problems than the general population.

This can be because there are fewer resources…more negative life events, and [they] face stigma and discrimination from people and services… Biology and genetics may also increase the likelihood of developing a mental health problem.

Mind

If you read my most recent blog you will have seen that I experienced horrendous discrimination at the hands of an ex-employer. This was because I disclosed to my employer the difficulties I was having in relation to being autistic, particularly in relation to the social side of things. I liked to keep my work and social life separate. You won’t find me gossiping around the water cooler or taking an extended lunch break while I chat about my weekend with colleagues.

I can understand the theory behind those “water cooler moments”. I know bonding with work colleagues is important. Unfortunately, I’ve never liked doing it and now I’ve found out I’m autistic, I know why. I find these moments excruciatingly awkward and fatiguing and I simple don’t benefit from trying to socialise with my colleagues!

There were numerous ways they discriminated against me and the fact that I’m covered under the Equality Act made no difference to my ex-employer. When just getting up and going to work every day takes every ounce every energy you have, finding energy to fight for my rights was impossible.

Autistic adults who do not have a learning disability are 9 times more likely to die from suicide.

Autistica

As well as reasons in line with the general population such as difficult life events, feelings of hopelessness and physical or mental health conditions, people with autism also have additional difficulties that could lead to suicidal feelings:

  • Delays in receiving a diagnosis–from personal experience, struggling with feeling there’s something “wrong” but not knowing what it is feels incredibly difficult.
  • Difficulties accessing support–as with mental health services, poor resourcing means that adults with autism aren’t receiving the support they need.
  • High levels of unemployment–it’s very common for people with autism to be over-educated and under-employed, as I am.

People with autism are vulnerable because the way they communicate and interact with other people is different. They have difficulty communicating their thoughts and feelings and may not be able to communicate their suicidal thoughts in a way that someone else can understand. They may not even know that what’s going on inside them is “suicidal thoughts”. I spent years in mental health services being judged for “acting out” because I didn’t have the words to explain my feelings–it now makes sense, why it took me years to find the words.

I need to remember that no matter what label or diagnosis I may have, I’m still me and that will never change. Self-acceptance is an incredibly powerful gift. If you know me, don’t worry about treating me differently. With all our similarities and differences, something we all have in common is that we’re human and we’re all stumbling through life as best we can—this is something genuinely beautiful we can connect over no matter what else is going on in our lives.

A few things you might find interesting:

  • You say “autism” to most people and they think of “Rainman”, however the experience of autism is unique to every individual–Anthony Hopkins was diagnosed with autism in his 70s.”Anthony Hopkins
  • It is no longer thought to be “an extension of the male brain”–this is out-dated thinking.
  • We are not “all on the spectrum” or “all a little bit autistic”–some people may be able to relate to some of the traits but the spectrum is not linear with non-autistic (neuro-typical) at one end and seriously autistic at the other. Check out this video or this comic strip to learn a new way of thinking about the spectrum.
  • Functioning labels are unhelpful–you may observe people as high functioning because they can communicate verbally and may have “low” support needs but it is unhelpful to make a judgment about what their life is like behind closed doors.
  • Autism isn’t being over diagnosed–some people with autism (especially females) are particularly good at masking therefore are more likely to go undiagnosed. These people are now being recognised.

Thank you so much for reading this! It feels huge to be sharing. It’s hard to open up about something like this; having shared with a few people, I’ve had a very mixed reaction, from blatant discrimination to acceptance and loyalty.

I hope this will be the first of many blogs that walk the cross-over between mental health and autism.

The workplace that almost completely ruined my life

For a long time I’ve been in a work situation that’s not suited me but I’m the type of person who just likes to keep my head down and get on with it. I don’t like to be noticed and my work is not my life so, I thought, if I could just go to work, get my work done and come home, I would be ok.

But things started to build up.

My GP asks me to keep a migraine diary and I realise I was getting a migraine at work every day that meant I was driving home with one putting myself and other road users at risk!

One of my colleagues said “I think you’re being bullied”, it took me aback, but thinking about it this was probably because, the person doing it was so manipulative I couldn’t quite admit what was happening.

I took on other people’s work (more senior than me), I wasn’t thanked by them, nor did I feel boosted, I felt more and more down trodden every single day.

I thought my request for reasonable adjustments was…reasonable but I was made to feel as though I was asking for the earth!

Occupational health asked for the same reasonable adjustments and pointed out I was covered by the equality act but still no adjustments were made.

I’d go into meetings feeling confident and come out feeling disrespected, belittled and devalued.

I started to open up about the struggles I was having to senior management but I ended up feeling incredibly vulnerable and felt like this was then actually being used against me.

This was jus the tip of the iceberg! Things build up slowly over time but little by little the toxic environment takes its toll!

No matter what part you play in an organisation, my opinion is that everyone has the right to be valued, but I felt as though I was being treated like the lowest of the low.

It wasn’t that my employers were passive un-listeners, it appeared that they actively had their fingers in their ears and were saying “no-no, we do not want to know about your needs, your needs are not important to us, it would be better for us if you didn’t have needs.”

I needed support but I felt like they didn’t care whether I was there or not, it felt like I meant nothing to them, it felt like they were saying “you are nothing” and the longer it went on, I started to believe it.

My self esteem has ended up in the gutter.

Something had to change!

I tried desperately to manage things from the inside, I had my union rep on my side. I had my GP advising me on what was best for my health and (eventually) I had occupational health recommending reasonable adjustments as I’m covered by the Equality Act.

Lady suffocating in plastic

But what do you do if at every turn, no matter how reasonable I am with my requests, I’m left feeling as though I’m banging my head against a brick wall?! At points, it felt like I was saying “please can I have air to breath?” and Senior Management replied, “It’s raining today.” Their sentence was accurate but completely unrelated to my request and made no attempt to solve the ongoing difficulties I faced.

I was left absolutely bewildered as to why they wouldn’t support my needs.

There are 3 main causes of workplace stress:

  • A mis-match in skills/knowledge—this is why the application/interview process is so important to match the correct people to the correct role. I may be highly over qualified for the role but I’ve managed this in previous roles by my unique capabilities being valued in other ways. I felt like the skills I offered at interview were ignored and I was left feeling completely exhausted by how they treated me.
  • Lack of support—no matter what level of the organisation you’re at, we all need support. I felt like, if I kept quiet all was fine but as soon as I found my voice (to ask for support), I was severely reprimanded.
  • Lack of control—autonomy is something humans desire for the good of their health. Organisations can become so process driven, they forget about the people doing those processes. I felt like a very small cog in a machine that wasn’t working very well. I have no problem being a small cog but sometimes I had ideas about efficiency or improving the process, not only was I ignored, I was made to feel as though I really shouldn’t have stepped out of line.

At one point, I attended a meeting to ask for reasonable adjustments, recommended by occupational health to be put in place. They were denied. I was slowly starving to death but the “choice” I was then given felt similar to being offered the one food to which I was allergic. Seriously, how was I meant to choose?!

Returning to work after some time off sick I was actually grieving after but I felt I had to hide this due to lack of support. Because I’m such a hard worker, no one noticed. I should never have been in this position!

At times, I wondered if I was losing my mind. Because of my disability I have specific needs. I was asked to work in conditions that I’d explained were inappropriate for me. It felt like my employers were deliberately trying to make my working conditions so impossible that I would choose to leave. Would they really do that? Surely not?!

The current climate is not one in which finding a new job is easy, believe me, I applied to 10s of job and went to a near equal number of interviews! Whenever I was given feedback it was always “we really liked you, there was just someone with a bit more experience…” or similar.

I found it really hard to pick myself up after each interview. My workplace were grinding me down, my self esteem was no where to be seen and at each interview I just wasn’t quite good enough. It’s really hard to go to the next interview and persuade them “I am good enough”!

I even began to wonder, if there’s something wrong with me, even if I move workplace, I will take the problem with me, I will still be treated badly in the next place…

But, I have found a new job and it is with some really wonderful people. The are friendly and kind, I have been made to feel welcome and, although I am a very small cog in a machine, I am already feeling valued.