Tag Archives: Autism Spectrum Disorder

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.

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.