diagnosis written on screen by person in a white coat

Autism—What’s in a diagnosis? Is finding a community more important?

In a previous blog I was explicit about what criteria had to be met in order for someone to be diagnosed with autism spectrum disorder (ASD). In this blog I’m looking at what a late diagnosis can mean—we’re a group of people who have developed a sense of self without being categorised as autistic:

All I ever wanted was to be normal, now I realised I am, neurodivergent is normal!

This can bring with it all sorts of pros and cons, a sense of relief as well as fear of discrimination. Add to that the idea that this diagnostic label could be applied formally or informally and there’s a big decision to be made.

In different countries the barriers to getting a diagnosis are varied. In the UK, although the process is free at point of delivery (which I don’t deny is fantastic) there are multiple barriers. Initially, it maybe difficult to find an understanding GP; there are still GPs with misconceptions, for example, I’ve heard people get turned away because they were able to make eye contact with their GP. Once the GP has made the referral, the waiting list at the local assessment service is likely to be years.

In most countries a huge barrier to diagnosis is cost. Some adults in the UK will choose to have a private assessment because they simply cannot wait for an NHS assessment. The challenge, when paying for a private diagnosis, will be finding a diagnostician, you can afford, who’s skilled in diagnosing adults. In America the cost can be $1600-$3500 (£1202-£2630) which is rarely covered by insurance.

In the UK, the Equality Act is in place (as an attempt) to ensure people with autism (and all other disabilities/protected characteristics) are treated fairly and without prejudice or discrimination. You do not need a formal diagnosis to be covered by the act. This means, (for example) employers and service providers should put reasonable adjustments in place so that the workplace is accessible and inclusive and you shouldn’t be subjected to bullying, harassment or discrimination because of your difference.

Once you’ve had the realisation that autism is the missing puzzle piece you’ve been searching for, it can be such a relief! So, is a professional diagnosis really necessary? For many in the autism community it simply isn’t needed. There are a variety of groups on social media for people going through the process of understanding what autism means for them as a adult. Neurodiversity is wide ranging and everyone’s experience is different. No-one’s checking if you’ve got a membership card! If you feel this is where you fit, we’re ok with that.

In Australia, this person is seeing a psychologist, they spoke about a possible diagnosis of Asperger’s a few years ago:

I have what’s called a preliminary diagnosis, which means that, in [my psychologist’s] professional opinion, if we went through the process, the answer would be “yes”, and that was good enough for me.

P (Australia)

It’s great that they’re getting the support they need without the need for a “formal” diagnosis. No one in the autism community gives it a second thought whether you’ve got a formal diagnosis, a preliminary diagnosis or are self-diagnosed. Everyone goes through different assessment processes anyway:

Therapist with client

I question whether I have a legitimate ASD diagnosis because my therapist wrote a letter stating so after several visits but I never went through the formal testing that I keep hearing about.

Tom (Canada)

Although autism is a genetic disorder there isn’t a blood test or any genetic screening that can be performed (yet); the assessment process can feel a bit informal to some. The “formal testing” Tom described could be the Autism Diagnostic Observation Schedule (ADOS) but this has been shown to be ineffective in adults, especially females. The Diagnostic Interview for Social and Communication Disorders (DISCO) is more effective in adults, it is more discussion based. Adults go through all sorts of different assessments, some are a couple of hours, others a full day, others happen over several weeks (perhaps to help gain a more rounded picture of the client). Some involve filling in questionnaires and discussion while others may only be discussion based with one or multiple clinicians.

A few tool people might find interesting/helpful if they’re not sure about self-diagnosis include the Autism Spectrum Quotient, Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) and this list has been put together by Tania Marshall regarding atypical traits seen in female adult. If you score highly in these “tests”, it doesn’t mean you have autism; they are purely tools that provide additional information for each of us as we learn more about ourselves.

I have an official diagnosis but, except my partner, no one else really believes I’m autistic… I’m fortunate that I now have a therapist but I’m not sure the diagnosis benefits me in any other way.

Lucy (America)

Whether you have a formal diagnosis or not, having to manage other people’s thoughts, feelings and expectations can be hard. There are pros and cons of going through the formal assessment process so it’s important that each person weighs these up for themselves.

The assessment process can be incredibly stressful, invalidating and may even negatively impact your sense of self, so if you don’t need to see a specialist, why put yourself through the stress?!

My GP was really helpful. She really listened to me then went through a set of questions, she confirmed my suspicions [that I’m autistic] and agreed to refer me for an official diagnosis but I really couldn’t cope with the stress of all that so I’m happy with my GP’s diagnosis.

Gemma (UK)

Gemma knows that she could go back to her GP at anytime and for a referral for a formal diagnosis but for the time being she’s content that her GP has agreed with her.

Some people would find it difficult to rely on a self-diagnosis for to a number of reasons including being confused by misdiagnosis, masking and lack of confidence in their own self awareness.

I’ve built my life on a foundation of masking, I’ve constantly altered things about myself that didn’t fit in. I don’t know who I am anymore. I’ve been diagnosed as bi-polar but that never felt right. If I mask so heavily, maybe that’s who I am but I’m desperate to unmask and see who am without the mask.

B (America)

Another benefit of going through the formal diagnostic process includes the impact on the autism community as a whole. The more people that receive an accurate diagnosis, the better the statistical landscape, the better educated people can be.

I’m still waiting for my formal diagnosis but I’m comfortable with the fact that those who know me well have had the same extraordinary light-bulb moments that I’ve had, my GP was very supportive and with my medical background and ability to research without bias, I’m very comfortable with understanding the criteria and have no doubt in my diagnosis.

For me, finding the autism community has been like arriving home. So much of my confusing life has fallen into place and is making sense. I’ve felt accepted and have heard experiences so similar to my own it’s been remarkable. If I had to pay for a formal diagnosis I’d certainly think twice about it, I’m incredibly grateful for the NHS but is it acceptable to wait 2 years for an assessment?!

Community wordle
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!