This is our first non-fiction book that we have read for the Mental Health Book Club Podcast. The book is written by Emma Louise Bridge, a 24-year-old female diagnosed with Autism and this is a collection of her diary entries exploring Emma’s world. After each diary entry Penelope Bridge, Emma’s mother, adds her own thoughts about the entries and summarises the main points that have a profound impact on Emma’s life.
We read about different scenarios that Emma faces which provide a real insight into the differences in the way a person with autism processes the world. Emma describes different ways of thinking, such as, literal thinking, theory of mind the impact changes in routine may have. There is also a lot of discussion on the issues that people may face as a result of hypersensitivities in terms of sound and touch and how Emma would find certain textures and noises difficult to handle.
This book really has two separate audiences – young people who might relate to the feelings and situations Emma describes, and those who are wanting to find out more about the impact of autism. The diary is interesting due to the insights into the workings of Emma’s mind and although Penelope’s summaries pull you out of Emma’s mind and sometimes detracts from the diary itself, it does provide valuable information that the second audience may be seeking.
Without understanding, autistic people and families are at risk of being isolated and developing mental health problems.
Autism is much more common than many people think. There are around 700,000 people on the autism spectrum in the UK – that’s more than 1 in 100. If you include their families, autism is a part of daily life for 2.8 million people.
Autism doesn’t just affect children. Autistic children grow up to be autistic adults.
Autism is a hidden disability – you can’t always tell if someone is autistic.
While autism is incurable, the right support at the right time can make an enormous difference to people’s lives.
34% of children on the autism spectrum say that the worst thing about being at school is being picked on.
63% of children on the autism spectrum are not in the kind of school their parents believe would best support them.
17% of autistic children have been suspended from school; 48% of these had been suspended three or more times; 4% had been expelled from one or more schools.
Seventy per cent of autistic adults say that they are not getting the help they need from social services. Seventy per cent of autistic adults also told us that with more support they would feel less isolated.
At least one in three autistic adults are experiencing severe mental health difficulties due to a lack of support.
Only 16% of autistic adults in the UK are in full-time paid employment, and only 32% are in some kind of paid work.
Only 10% of autistic adults receive employment support but 53% say they want it.
When compared to countries with top-performing kids, the United States is #3 for the most autism diagnoses in the world. This list of 17 competing countries that outperform the US academically, and who we could also find recent autism data on; it’s not a list of the whole world, and it doesn’t include autism rates older than 2004.
Autism is listed in the Diagnostic and statistics manual for mental disorders DSM-5 it is not viewed as a mental health disorder but a neurological disorder
Autism spectrum conditions have a genetic component intermixed with the way people interact with their environment.
People are born with autism but how they express it depends on their genes and their environment.
The term autistic spectrum disorder is what describes the commonalities in an individual’s autistic behaviour coupled with emotional and/or sensory differences.
People on the autism spectrum can have a co-occurring mental health condition
Often treated with psychotropic medications such as SSRI’s.
Co-occurring mental health conditions include:
Issues occur when people on the autism spectrum try to access appropriate and effective treatment that takes into account their individual needs as a person with autism,
It’s not possible to treat the mental health condition and autism separately as the two are linked
Autism impacts the person and so does their mental health condition.
You need to understand how each works on the other. This can mean it is difficult to identify which aspect is causing the issue, the autism, the mental health condition or a combination of the two.
Purkis, J., Goodall, E., & Nugent, J. (2016). The Guide to Good Mental Health on the Autism Spectrum. Jessica Kingsley Publishers.
Diagnosis of these conditions are based on criteria in the DSM-5 and the ICD-10 placing people into categories based on symptoms and presentation.
These categories are continuing to develop and will change over time with the most notable being the criteria for Asperger’s syndrome being replaced with a diagnosis of autistic spectrum disorder.
A diagnosis is only helpful if the individual gains some benefit e.g. subsidised treatment or simply as a way to help a person understand how they feel and how they behave and struggle to connect with others.
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):
Deficits in social-emotional reciprocity (the practice of exchanging things with others for mutual benefit), ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
Specify current severity
Severity is based on social communication impairments and restricted repetitive patterns of behavior:
Level 1 ‘requiring support’
Level 2 ‘requiring substantial support’
Level 3 ‘requiring very substantial support’
(See table 1).
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies (are rhythmic, repetitive, fixed, predictable, purposeful, but purposeless movements that occur in children), lining up toys or flipping objects, echolalia (meaningless repetition of another person’s spoken words), idiosyncratic phrases (Idiosyncratic language refers to language with private meanings or meaning that only makes sense to those familiar with the situation where the phrase originated)).
Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
Specify current severity:
Severity is based on social communication impairments and restricted, repetitive patterns of behaviour
Level 1 ‘requiring support’
Level 2 ‘requiring substantial support’
Level 3 ‘requiring very substantial support’
C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.
Specify if: With or without accompanying intellectual impairment With or without accompanying language impairment Associated with a known medical or genetic condition or environmental factor (Coding note: Use additional code to identify the associated medical or genetic condition.) Associated with another neurodevelopmental, mental, or behavioral disorder (Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental, or behavioral disorder[s].) With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp. 119-120, for definition) (Coding note: Use additional code 293.89 [F06.1] catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)
Table 1. Severity levels for autism spectrum disorder
Restricted, repetitive behaviors
Level 3 “Requiring very substantial support”
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches
Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.
Level 2 “Requiring substantial support”
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and how has markedly odd nonverbal communication.
Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.
Level 1 “Requiring support”
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.
Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.
Social (Pragmatic) Communication Disorder 315.39 (F80.89)
A. Persistent difficulties in the social use of verbal and nonverbal communication as manifested by all of the following:
Deficits in using communication for social purposes, such as greeting and sharing information, in a manner that is appropriate for the social context.
Impairment of the ability to change communication to match context or the needs of the listener, such as speaking differently in a classroom than on the playground, talking differently to a child than to an adult, and avoiding use of overly formal language.
Difficulties following rules for conversation and storytelling, such as taking turns in conversation, rephrasing when misunderstood, and knowing how to use verbal and nonverbal signals to regulate interaction.
Difficulties understanding what is not explicitly stated (e.g., making inferences) and nonliteral or ambiguous meanings of language (e.g., idioms, humor, metaphors, multiple meanings that depend on the context for interpretation).
B. The deficits result in functional limitations in effective communication, social participation, social relationships, academic achievement, or occupational performance, individually or in combination.
C. The onset of the symptoms is in the early developmental period (but deficits may not become fully manifest until social communication demands exceed limited capacities).
D. The symptoms are not attributable to another medical or neurological condition or to low abilities in the domains or word structure and grammar, and are not better explained by autism spectrum disorder, intellectual disability (intellectual developmental disorder), global developmental delay, or another mental disorder.
From the coding manual produced in 2015 Autism and Aperger’s syndrome are still considered separate coding categories unlike the DSM-5
The ICD-10 is the most commonly-used diagnostic manual in the UK.
There are a number of autism profiles,
These are included under the Pervasive Developmental Disorders heading, defined as “A group of disorders characterized by qualitative abnormalities in reciprocal social interactions and in patterns of communication, and by a restricted, stereotyped, repetitive repertoire of interests and activities. These qualitative abnormalities are a pervasive feature of the individual’s functioning in all situations”.
A revised edition (ICD-11) is expected in 2018 and is likely to closely align with the latest edition of the American Diagnostic and Statistical Manual (DSM).
People with Asperger syndrome are of average or above average intelligence. They do not usually have the learning disabilities that many autistic people have, but they may have specific learning difficulties. They have fewer problems with speech but may still have difficulties with understanding and processing language.
A. A lack of any clinically significant general delay in spoken or receptive language or cognitive development. Diagnosis requires that single words should have developed by two years of age or earlier and that communicative phrases be used by three years of age or earlier. Self-help skills, adaptive behaviour and curiosity about the environment during the first three years should be at a level consistent with intellectual development. However, motor milestones may be somewhat delayed and motor clumsiness is usual (although not a necessary diagnostic feature). Isolated special skills, often related to abnormal preoccupations, are common, but are not required for diagnosis.
B. Qualitative abnormalities in reciprocal social interaction (criteria as for autism).
C. An unusually intense circumscribed interest or restrictive, repetitive, and stereotyped patterns of behaviour, interests and activities (criteria as for autism; however, it would be less usual for these to include either motor mannerisms or preoccupations with part-objects or non-functional elements of play materials).
D. The disorder is not attributable to other varieties of pervasive developmental disorder; schizotypal disorder (F21); simple schizophrenia (F20.6); reactive and disinhibited attachment disorder of childhood (F94.1 and .2); obsessional personality disorder (F60.5); obsessive-compulsive disorder (F42).
This could suggest that, while women and girls are less likely to develop autism, when they do they are more severely impaired. Alternatively, it could suggest ‘high-functioning’ women and girls with autism have been underdiagnosed, compared to men and boys.
Women and girls with Asperger syndrome may be better at masking their difficulties in order to fit in with their peers and have a more even profile of social skills in general.
Gould and Ashton-Smith (2011) identified the different way in which girls and women present under the following headings: social understanding, social communication, social imagination which is highly associated with routines, rituals and special interests. Some examples are below.
Girls are more able to follow social actions by delayed imitation because they observe other children and copy them, perhaps masking the symptoms of Asperger syndrome (Asperger’s and girls by Tony Attwood, 2007).
Interacting Socially more often
Girls are often more aware of and feel a need to interact socially. They are involved in social play, but are often led by their peers rather than initiating social contact. Girls are more socially inclined and many have one special friend.
Being subject to greater social expectations
In our society, girls are expected to be social in their communication. Girls on the spectrum do not ‘do social chit chat’ or make ‘meaningless’ comments in order to facilitate social communication. The idea of a social hierarchy and how one communicates with people of different status can be problematic and get girls into trouble with teachers.
Having more active imaginations and engaging in pretend play more often
Evidence suggests that girls have more active imaginations and more pretend play (Knickmeyer, Wheelwright and Baron-Cohen, 2008). Many have a very rich and elaborate fantasy world with imaginary friends. Girls escape into fiction, and some live in another world with, for example, fairies and witches.
Having interests which are similar to other girls
The interests of girls in the spectrum are very often similar to those of other girls – animals, horses, classical literature – and therefore are not seen as unusual. It is not the special interests that differentiate them from their peers but it is the quality and intensity of these interests. Many obsessively watch soap operas and have an intense interest in celebrities.
Certain autistic traits have an impact upon an individual and their levels of anxiety
e.g. perfectionism, preference for structure and routine and repetitive behaviours can have an impact.
People with autism like to imagine outcomes to situations that they may find themselves in. The idea is to make new experiences aren’t so daunting, but this could also lead to catastrophizing in relation to how to understand non-autistic people and they may create in their minds an unlikely, negative future around misunderstanding other’s motivations.
This can be combated with doing:
A SWOT analysis – strengths, weaknesses, opportunities and threats to allow you to see the entire situation you might face
Three specific thinking styles associated with autism which are rigid, logical and hyper-focused or fixated thinking styles.
Logical thinking – decisions are often made on practical logical parameters rather than having an emotional input (not saying that the person does not have any emotions).
This provides the individual the feeling of control and order and allows for the evaluation of options.
But can result in misunderstandings when people don’t share the same logic (in Autism Anxiety and Me this can be shown as the issue Emma has with the coat hangers whilst she is volunteering in the charity shop)
Rigid thinking – black and white thinking
Again, provides the individual with feeling a sense of control and order.
Issues occur as people cannot see all possible outcomes in a situation and may focus on the worst. Worries and anxieties that people dislike you even when there is limited evidence for that. Judgements about things/people/situations too quickly before they understand the full picture.
e.g. only accepting food in two’s before making it on Emma’s plate
Hyper-focused/fixated thinking – broken record
Occasionally leads to clarity and/or insight into self/others/situations but can also cause sleeping difficulties due to rumination about certain situations and increased anxiety due to negative focus.
The material for the blind had to be the Wallace and Gromit fabric.
People with autism will often have a set of routine that helps them feel in control so changes can cause high levels of anxiety.
Past treatment for children with autism was to ensure that they would be brought up with a strict routine and any changes signalled to the child in advance. However, the world isn’t like this, it’s often unpredictable and change is inevitable. The issues start to become a major issue in adulthood when the individual is unable to retain their rigid routine causing major anxiety because they have not been able to develop coping mechanisms and strategies to developing a resilience when dealing with change.
Some individuals were brought up in complete contrast – they had little to no routine change becomes “routine” itself.
For others change can elicit fear because they feel it’s the end of the world.
Coping with change
If you have a lack of coping mechanisms associated with change it has been suggested that you start by identifying small changes that you can do, plan and take control of those changes and see that changes are manageable. This is called self-integrated change. The more you do this and see the consequences of the change can be controlled and managed the better you will be able to cope.
You could complete a pros and cons list but this is only of benefit if there is a decision to be made so if it is an unavoidable change like your parents have decided to move and sell your house this isn’t going to work.
If it is something you cannot avoid then maybe a SWOT analysis would be more appropriate. This method would allow you to approach the change in a different way and could see it as positive once you have identified the strengths, weaknesses, opportunities and threats.
Anxiety Journal – allows you to identify triggering events that cause you to feel anxiety.
So a journal would have the date, time, what happened (how you felt) what was happening before you started to feel anxious and possible triggers.
Psychotherapy/counsellor – you may need additional help to deal with your anxiety and autism so you may need professional help and they will be able to help you through situations through role play.
Trusted friends/family – ask people for their opinion on a situation, they can help by challenging your paranoia and catastrophizing (which we see with Emma’s mum Penelope).
Sensory inputs are affected by:
Combinations of sensory inputs
Sensory aversions can increase he anxiety for both the individual with autism and those around them. Some people with autism will sense others anxiety about the potential of a meltdown. If they come into contact with something they want to avoid. Therefore, everyone needs to have a plan of action that they agree on to reduce everyone’s anxiety.
Common issue – the person with autism fear’s rejection/worry that people won’t understand them and responding in an unkind fashion, there is worry about being hurt by others, and unintentionally hurt others. There is also anxiety about the individual looking stupid and not knowing what to say. An individual with autism has a less well-developed set of social skills as a symptom but those can be learnt. There are often rules surrounding when we use pleases and thank yous.
Ways to dealing with this anxiety by asking a trusted friend/family members opinions about the situation and what you can do next time in a similar situation.
It is important to note that there are people out there that are just mean and unkind and it is okay to avoid those types of people. It can become more complicated if the individual who is mean has some authority over you but there are still ways of dealing with the situation such as going to your boss’s boss.
You can also practice communication by attending groups that have similar interests as you do or social groups for people with autism because that will give you a save environment for practice and is less stressful (as much as social situations can be).
A little bit more on Therapy
There are several different therapy options that could help: as I said before it is important to find a clinician who has experience of people with autism.
CBT – people become aware of how they are thinking and those thinking patterns are challenged and patterns changed.
Solution focused therapy – is more focused on what the client wants to achieve and focusing on the present and future and not the past. The idea of this therapy is to develop solutions and problem solve.
Schema therapy – development of negative core beliefs 5 domains split into 18 schemas that Nick Dubin boils down to five issues for people with autism
People cannot be trusted
I cannot function adequately in the world
Things are either good or bad
I am inherently worthless/I have worth when I have the approval of others
The world in unpredictable and unsafe
Acceptance and commitment therapy – accept that difficult issues exist and skills to deal with painful/negative thoughts to have less impact
Valium and temazapam
Ensuring that the place you sleep is suitable
Ensure the bed/sofa is comfortable
Ensure that you have the right things on the bed – blanket or duvet
Ensuring the room is relaxing
The room is dark
May find some music soothing
Smell in the room – no strong smells
Water by the bed
Snacks by the bed
Suitable sleeping temperature
Social anxiety disorder diagnosis
The Current DSM-5 Definition:
A. A persistent fear of one or more social or performance situations in which the person is exposed to unfamiliar people or to possible scrutiny by others. The individual fears that he or she will act in a way (or show anxiety symptoms) that will be embarrassing and humiliating.
B. Exposure to the feared situation almost invariably provokes anxiety, which may take the form of a situationally bound or situationally pre-disposed Panic Attack.
C. The person recognizes that this fear is unreasonable or excessive.
D. The feared situations are avoided or else are endured with intense anxiety and distress.
E. The avoidance, anxious anticipation, or distress in the feared social or performance situation(s) interferes significantly with the person’s normal routine, occupational (academic) functioning, or social activities or relationships, or there is marked distress about having the phobia.
F. The fear, anxiety, or avoidance is persistent, typically lasting 6 or more months.
G. The fear or avoidance is not due to direct physiological effects of a substance (e.g., drugs, medications) or a general medical condition not better accounted for by another mental disorder…
Surely my way is not always wrong, just because it’s different from other people’s ways? I mean everyone’s way is weird to someone…
In her 24 years Emma has experienced a lot, and much of this has been coloured by her autism and social anxiety. Funny and self-aware, this collection of Emma’s diary entries capture her hidden thoughts and insightful explanations as to why the world can be such a puzzling place.
Wry observations on social rules, friendships, relationships, and facing changes give compelling insight into how Emma confronts challenges, and her determination to live life to the fullest. Helpful advice at the end of each entry also give practical strategies for coping with common issues.