Tag Archives: traits

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

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!

What is autism? The diagnostic criteria explained

When you think about autism, you may, stereotypically, think of a boy, probably non-verbal, who may become violent at times. There is, however, also, the saying “when you’ve met 1 person with autism, you’ve met 1 person with autism”. That’s because Autism Spectrum Disorder (ASD) is so wide varying in how each individual experiences it.

The DSM V is the official American manual for assessment and diagnosis for mental disorders. ‘5’ refers to the number of iterations it has gone through to arrive at the current recommendations for the criteria needed in order to officially diagnose someone with each particular disorder.

Autism spectrum disorder (ASD) is not a mental disorder, it is a neurodevelopmental disorder, some prefer the word condition. The medical model of ASD speaks about the individual’s deficits (see each criterion below)—in future blogs I’m planning to address why this may help to diagnose someone but may be unhelpful when trying to live on the spectrum.

It is interesting to note that Asperger’s Syndrome was a separate diagnosis in the DSM IV, however inconsistencies were found between different diagnosticians—therefore, in the DSM V there’s one umbrella term. (Some people who were diagnosed with Asperger’s still use the term, they are not wrong to use it but it is not used for people diagnosed today.)

DSM V—Autism Spectrum Disorder

Criterion A—Persistent deficits in social communication and social interaction across contexts, manifest by 3 of 3 symptoms.

This means the individual will have difficulties making connections with people socially in all environments, with friends, family and strangers. All of the following 3 criteria have to be present:

A1. Social initiation and response

Deficits in social‐emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction.

This covers a whole range of struggles; some people with autism do not speak while others may not understand how to start or end conversations. Other examples include: not sharing in another’s achievements, one sided conversations and difficulty sharing in social games.

A2. Non-verbal communication

Deficits in non-verbal communicative behaviors used for social interaction.

This represents the individuals difficulty with eye contact, understanding body language or gestures. Some individuals may talk with an unusual pitch, intonation, rate or volume of voice while others may not use facial expressions or struggle to coordinate verbal and non-verbal communication.

A3. Social awareness and insights + the broader concepts of social interactions

Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers).

Individuals have difficulty adjusting to different social contexts e.g. inappropriate questioning, laughing or limited understanding about other’s needs. Difficulties sharing imaginative play and making friends. Children may prefer to play with people much older or younger than themselves or to spend time on their own. Some individuals may appear to have a complete lack of interest in other people.

Criterion B—Restricted, repetitive patterns of behavior, interests, or activities, at least 2 of 4 symptoms:

B1. Atypical speech and body movements

Stereotyped or repetitive speech, motor movements, or use of objects.

Examples vary between individuals but could include: unusual speech such as pedantic, jargon, echolalia or neologisms; repetitive hand movements such as flapping or clapping, whole body movements, facial movements (grimacing) or excessive teeth grinding.

B2. Rituals and resistance to change

Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change.

While this may look like a need for control, individuals struggle with a need for routine and struggle with change. Even thinking patterns can be rigid such that there’s an inability to understand humour. Extreme distress will be observed if change is forced upon the individuals without any support.

B3. Preoccupations with objects or topics

Highly restricted, fixated interests that are abnormal in intensity or focus.

Overly perfectionist views with preoccupation in unusual inanimate objects or non-relevant, non-functioning parts of objects. Individuals may have incredibly interest in specific subjects—on face value it may not seem unusual until the depth of the interest is understood.

B4. Atypical sensory behaviours

Hyper‐or hypo‐reactivity to sensory input or unusual interest in sensory aspects of environment.

Individuals may find any kind of sensory input overwhelming or may not respond to it at all. An apparent indifference to pain/heat/cold may be observed. This may mean that they explore objects in unusual ways and seek out overt sensory input.

Criterion C—Symptoms must be present in early childhood

But may not become fully manifest until social demands exceed limited capacities.

Criterion D—Symptoms together limit and impair everyday functioning.

Although the individual may have learnt to mask from a young age, thus the impairment may appear subtle to the observer, within the individual, the impact of their symptoms will be profound.

Additional symptoms and co-morbid conditions

People diagnosed with autism may experience all sorts of other symptoms/difficulties. These many be related to their autism or may be a co-morbid condition. Symptoms that may be experienced/observed include (but certainly not limited to):

  • Shutdowns – someone who can usually speak/communicate well, becomes uncommunicative/has trouble communicating due to excessive stress linked to all of traits A, B2 and B4.
  • Meltdowns – each individual will experience these differently, from excessive crying to extreme outbursts of anger/aggression. In children, this may look like tantrums; adults may feel them coming on and try desperately to suppress them for as long as possible (weeks-months sometimes) but they are a sign of extreme overwhelm and are particularly linked to traits B2 and B4 above.
  • High levels of anxiety – due to the world being set up for neurotypicals, it can be incredibly daunting for an autistic to attempt navigation. When communication doesn’t go to plan, sensations are overwhelming or routines are disrupted, feelings can become hard to bear.
  • Taking longer to process events/trauma – a particular event may not cause any problems for a neurotypical person but an autistic individual may struggle to process what has happened. This is linked to traits B4 and the A above, no matter how well the autistic person works to overcome their difficulties, managing the sensory input and processing it will always be difficult.
  • Difficulties managing physical health problems – this may be due to an inability to recognise signals from the body or having a higher or lower pain tolerance than the neurotypical population. This can lead to individuals becoming very ill before seeking help or taking longer to recover from illnesses. Some individuals with autism struggle with knowing when their body is hungry, satiated or when they need the toilet.
  • Loneliness – people with autism still have the same human needs to be loved and to love but communicate in a different way. They may not know that their desires stem from standard human instincts and require support.
  • Self-harm and suicidal behaviour – due to severe stress individuals with autism can be driven to extremely dangerous coping mechanisms. See previous blog in “mental health for all”.

Co-morbid conditions include:

  • Learning Disability
  • Depression
  • Anxiety
  • Eating Disorders
  • Attention Deficit Hyperactive Disorder
  • Conduct Disorder
  • Personality Disorder

Please look out for future blogs when I’ll be explaining more about my experience, including why females are more likely to be diagnosed later than males, whether a formal diagnosis is necessary for support and why there’s such a link between eating disorders and autism.