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.

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.