Trigger warning: this podcast discusses childhood physical, emotional and sexual abuse as well as neglect. This episode may be distressing to some listners and may not be suitable for younger listners.
Call for Participants: Social Media, Young Adults and Wellbeing
Is social media important to you? Do you use it frequently? Is it an everyday part of your life?
We are very interested to hear from you about this.
We are doing research to learn about the way young adults 18 – 34 years use social media, what they use, how much they use it, and why they do.
We are curious to learn from you and your beliefs about the impact that social media has had on your life and those around you, how you feel when using it, and any good and bad things about using social media?
We hope to use your thoughts to help to make social media safer for young adults like you.
This survey is completely anonymous.
We expect that the survey will take around 15 mins to complete
This research project has been approved by the Human Research Ethics Committee of The University of Melbourne. Human Ethics ID: 1750388
For more information about the project, or to complete the survey, please follow the RedCap Survey link below. You may open the survey in your web browser by clicking the link below: Social media use, young adults and well-being
Am I Normal Yet is a breath of fresh air talking openly about the issues surrounding mental health. Evie suffers from OCD and at sixteen not only does she have to fight with her own mental health but she has to deal with the inevitable teenage issues of college, friends and boys and let’s be honest being a teenager is hard enough without the additional issues Evie has to face.
This book has a strong theme of feminism running throughout and didn’t end in the very clichéd love conquers all view of the world that some books I have been reading recently have contained. If only recovering from mental health was so easy, dating and having another person in your life will often complicate matters and make you feel even more insecure than you may have been before.
You get to see the ups and downs associated with mental illness and the issues associated with medication and therapy, along with concerns about others reaction to a mental health diagnosis.
It is also interesting to read about the fact that the condition that Evie is suffering from can be considered “typical OCD” with Evie performing the stereotypical repetitive behaviours being commonly seen with OCD, doesn’t mean that it is any less severe and debilitating to a person’s life.
I must admit there was one part of the book I disagreed with as yes not all discussion about mental health has been useful that what it is doing is highlighting that more public discussion is needed. I would like to remain hopeful that if people were fully away of mental health conditions and their impact that they wouldn’t be using the terms incorrectly if their knowledge of the condition was complete.
Mental illnesses have gone too far the other way. Because now mental health disorders have gone “mainstream”. And for all the good it’s brought people like me who have been given therapy and stuff, there’s a lot of bad it’s brought too. Because now people use the phrase OCD to describe minor personality quirks.
“Oooh, I like my pens in a line, I’m so OCD.”
NO YOU’RE F*****G NOT!
I think that people have been mislabelling themselves as being OCD for years, long before mental health illnesses started to become more widely accepted in society’s broader conversation.
We at the Mental Health Book Club would highly recommend this book.
Imagine that your mind gets stuck on a particular thought or image (which is the obsessive thought)
Then this thought or image gets constantly replayed in your mind, over and over and over again no matter what you do . . .
It’s not like you want these thoughts – it feels like an avalanche, its overwhelming . . .
Along with these thoughts you start to have intense feelings of anxiety . . .
Anxiety is a normal emotion that people feel because this emotion tells you to respond, react, protect yourself and do something to reduce that anxiety. It’s our brain’s warning system indicating that you’re in danger.
But this can cause confusion because on one hand, you recognize the fear you are feeling doesn’t make any sense, it’s not reasonable yet it feels real
But your brain is lying to you causing you to question why this would be happening?
Why would you be experiencing feelings if they weren’t true? Feelings don’t lie . . .
Unfortunately, if you have OCD, they do lie. If you have OCD, the warning system in your brain is not working correctly. Your brain is telling you that you are in danger when you are not.
When scientists compare pictures of the brains of groups of people with OCD, they can see that on average some areas of the brain are different compared to individuals who don’t have OCD. Those tortured with this disorder are desperately trying to get away from paralyzing, unending anxiety.
Most of us have worries, doubts and superstitious beliefs. It is only when your thoughts and behaviour make no sense to other people, cause distress or become excessive that you may want to ask for help. OCD can occur at any stage of your life. If you experience OCD you may also feel anxious and depressed and you may believe you are the only one with obsessive thoughts.
An obsession is an unwelcome thought or image that you keep thinking about and is largely out of your control. These can be difficult to ignore.
These obsessions can be disturbing and are accompanied by intense and uncomfortable feelings such as fear, disgust, doubt, or a feeling that things have to be done in a way that is “just right.”
These OCD obsessions are time consuming and get in the way of important activities the person values, which is important as it determines whether someone has OCD — the psychological disorder — rather than having an obsessive personality trait.
You might believe that something bad will happen if you do not do these things. You may realise that your thinking and behaviour is not logical but still find it very difficult to stop.
Occasional thoughts about getting sick or about the safety of loved ones is normal
Even if the content of the “obsession” is more serious, for example, everyone might have had a thought from time to time about getting sick, or worrying about a loved one’s safety, or wondering if a mistake they made might be catastrophic in some way, that doesn’t mean these obsessions are necessarily symptoms of OCD. While these thoughts look the same as what you would see in OCD, someone without OCD may have these thoughts, be momentarily concerned, and then move on. In fact, research has shown that most people have unwanted “intrusive thoughts” from time to time, but in the context of OCD, these intrusive thoughts come frequently and trigger extreme anxietythat gets in the way of day-to-day functioning.
A compulsion is something you think about or do repeatedly (repetitive behaviour) to relieve anxiety. This can be hidden or obvious. Such as saying a phrase in your head to calm yourself. Or checking that the front door is locked.
People with OCD are aware that they will only experience temporary relief and that the compulsion is not a solution but the problem is for them is that they feel that they don’t have a better way to cope.
Compulsions can also include avoiding situations that trigger obsessions.
These compulsions are time consuming and get in the way of day to day life.
In most cases, individuals with OCD feel driven to engage in compulsive behaviour and would rather not have to do these time consuming and many times torturous acts.
What compulsions are not:
Not all repetitive behaviours or “rituals” are compulsions. Bedtime routines, religious practices, and learning a new skill involve repeating an activity over and over again, but are a welcome part of daily life.
Behaviours depend on the function and context:
Arranging and ordering DVDs for eight hours a day isn’t a compulsion if the person works in a video store.
Behaviours depend on the context. Arranging and ordering books for eight hours a day isn’t a compulsion if the person works in a library.
Certain activities such as Bedtime routines, religious practices, and learning a new skill all involve some level of repeating an activity over and over again, but are usually a positive and functional part of daily life.
Similarly, you may have “compulsive” behaviours that wouldn’t fall under OCD, if you are just a stickler for details or like to have things neatly arranged. In this case, “compulsive” refers to a personality trait or something about yourself that you actually prefer or like.
Like all other mental health conditions, OCD can only be diagnosed by a trained professional and there are no blood tests or brain imaging tests to diagnose OCD. The diagnosis is made based on the observation and assessment of the person’s symptoms.
OCD can start at any time from preschool to adulthood. Although OCD does occur at earlier ages, there are generally two age ranges when OCD first appears, between ages 10 and 12 and then between the late teens and early adulthood.
Related problems for people with OCD
Some people with OCD may also have or develop other serious mental health problems, including:
depression – a condition that typically causes lasting feelings of sadness and hopelessness, or a loss of interest in the things you used to enjoy
eating disorders – conditions characterised by an abnormal attitude towards food that cause you to change your eating habits and behaviour (we see that xxx has was misdiagnosed to begin with anorexia)
generalised anxiety disorder – a condition that causes you to feel anxious about a wide range of situations and issues, rather than one specific event
a hoarding disorder – a condition that involves excessively acquiring items and not being able to throw them away, resulting in unmanageable amounts of clutter
DSM-5 Diagnostic Criteria for Obsessive-Compulsive Disorder (300.3)
A. Presence of obsessions, compulsions, or both:
Obsessions are defined by (1) and (2):
Recurrent and persistent thoughts, urges, or impulses that are experienced, at some time during the disturbance, as intrusive and unwanted, and that in most individuals cause marked anxiety or distress.
The individual attempts to ignore or suppress such thoughts, urges, or images, or to neutralize them with some other thought or action (i.e., by performing a compulsion).
Compulsions are defined by (1) and (2):
Repetitive behaviours (e.g., hand washing, ordering, checking) or mental acts (e.g., praying, counting, repeating words silently) that the individual feels driven to perform in response to an obsession or according to rules that must be applied rigidly.
The behaviours or mental acts are aimed at preventing or reducing anxiety or distress, or preventing some dreaded event or situation; however, these behaviours or mental acts are not connected in a realistic way with what they are designed to neutralize or prevent, or are clearly excessive.
Note: Young children may not be able to articulate the aims of these behaviours or mental acts.
B. The obsessions or compulsions are time-consuming (e.g., take more than 1 hour per day) or cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.
C. The obsessive-compulsive symptoms are not attributable to the physiological effects of a substance (e.g., a drug of abuse, a medication) or another medical condition.
D. The disturbance is not better explained by the symptoms of another mental disorder (e.g., excessive worries, as in generalized anxiety disorder; preoccupation with appearance, as in body dysmorphic disorder; difficulty discarding or parting with possessions, as in hoarding disorder; hair pulling, as in trichotillomania [hair-pulling disorder]; skin picking, as in excoriation [skin-picking] disorder; stereotypies, as in stereotypic movement disorder; ritualized eating behaviour, as in eating disorders; preoccupation with substances or gambling, as in substance-related and addictive disorders; preoccupation with having an illness, as in illness anxiety disorder; sexual urges or fantasies, as in paraphilic disorders; impulses, as in disruptive, impulse-control, and conduct disorders; guilty ruminations, as in major depressive disorder; thought insertion or delusional preoccupations, as in schizophrenia spectrum and other psychotic disorders; or repetitive patterns of behaviour, as in autism spectrum disorder).
Specify if: With good or fair insight: The individual recognizes that obsessive-compulsive disorder beliefs are definitely or probably not true or that they may or may not be true.
With poor insight: The individual thinks obsessive-compulsive disorder beliefs are probably true.
With absent insight/delusional beliefs: The individual is completely convinced that obsessive-compulsive disorder beliefs are true.
Tic-related: The individual has a current or past history of a tic disorder.
Mental, Behavioural and Neurodevelopmental disorders
Hoarding disorder co-occurrent with lack of insight and/or delusions
Hoarding disorder w absent insight or delusional beliefs
Obsessive compulsive disorder
A disorder characterized by the presence of persistent and recurrent irrational thoughts (obsessions), resulting in marked anxiety and repetitive excessive behaviours (compulsions) as a way to try to decrease that anxiety.
An anxiety disorder characterized by recurrent, persistent obsessions or compulsions. Obsessions are the intrusive ideas, thoughts, or images that are experienced as senseless or repugnant. Compulsions are repetitive and seemingly purposeful behaviour which the individual generally recognizes as senseless and from which the individual does not derive pleasure although it may provide a release from tension.
An anxiety disorder in which a person has intrusive ideas, thoughts, or images that occur repeatedly, and in which he or she feels driven to perform certain behaviours over and over again. For example, a person may worry all the time about germs and so will wash his or her hands over and over again. Having an obsessive-compulsive disorder may cause a person to have trouble carrying out daily activities.
Disorder characterized by recurrent obsessions or compulsions that may interfere with the individual’s daily functioning or serve as a source of distress.
Obsessive-compulsive disorder (ocd) is a type of anxiety disorder. If you have ocd, you have repeated, upsetting thoughts called obsessions. You do the same thing over and over again to try to make the thoughts go away. Those repeated actions are called compulsions. Examples of obsessions are a fear of germs or a fear of being hurt. Compulsions include washing your hands, counting, checking on things or cleaning. Untreated, ocd can take over your life researchers think brain circuits may not work properly in people who have ocd. It tends to run in families. The symptoms often begin in children or teens. Treatments that combine medicines and therapy are often effective.
John Greist Clinical Professor of Psychiatry, University of Wisconsin; International OCD Foundation Scientific Advisory Board
Maggie Baudhuin, MLS Coordinator, Madison Institute of Medicine, Inc.
The cause of OCD is complicated and no one really knows what factors might be involved, but here are some of the things that are thought to impact the development of OCD:
family history – research has shown that you’re more likely to develop OCD if a family member has it, possibly because of your genes but these have been shown to only be partly responsible
differences in the brain – some people with OCD have areas of unusually high activity in their brain or low levels of a chemical called serotonin
Research suggests that OCD involves problems in communication between the front part of the brain and deeper structures. These brain structures use a chemical messenger called serotonin. Pictures of the brain at work also show that in some people, the brain circuits involved in OCD become more normal with either serotonin medicines or cognitive behaviour therapy (CBT).
life events – OCD may be more common in people who’ve experienced bullying, abuse or neglect and it sometimes starts after an important life event, such as childbirth or a bereavement
personality – neat, meticulous, methodical people with high personal standards may be more likely to develop OCD, as may those who are generally quite anxious or have a very strong sense of responsibility for themselves and others
time of onset – some experts think that OCD that begins in childhood may be different from the OCD that begins in adults. For example, a recent review of twin studies3 has shown that genes play a larger role when OCD starts in childhood (45-65%) compared to when it starts in adulthood (27-47%).
Studies find that it takes an average of 14 to 17 years from the time OCD begins for people to obtain appropriate treatment.
Stigma and things that reduce people seeking treatment
Some people choose to hide their symptoms, often in fear of embarrassment or stigma. Therefore, many people with OCD do not seek the help of a mental health professional until many years after the onset of symptoms.
lack of public awareness of OCD, so many people were unaware that their symptoms represented an illness that could be treated.
Lack of proper training by some health professionals often leads to the wrong diagnosis. Some patients with OCD symptoms will see several doctors and spend several years in treatment before receiving a correct diagnosis.
Difficulty finding local therapists who can effectively treat OCD.
Not being able to afford proper treatment if you are in countries that you need to pay or that the NHS has not been able to provide the services you need and you decide to go private.
The medical profession has often considered OCD bizarre and as such assumed it to be rare. Families are often reluctant to talk about OCD due to the stigma attached to mental illness. Clearly OCD will have an effect on the sufferer, but it can be difficult to understand the effect it can have on their families. OCD is all-encompassing and all family members are inextricably involved with the sufferer’s illness.
that helps you face your fears and obsessive thoughts without “putting them right” with compulsions working with your therapist to break down your problems into their separate parts, such as your thoughts, physical feelings and actions encouraging you to face your fear and let the obsessive thoughts occur without neutralising them with compulsive behaviours – you start with situations that cause you the least anxiety first, before moving onto more difficult thoughts called – exposure and response prevention https://www.psychguides.com/guides/obsessive-compulsive-disorder-treatment-program-options/
The treatment is difficult and may sound frightening, but many people find that when they confront their obsessions, the anxiety does eventually improve or go away.
People with fairly mild OCD usually need about 10 hours of therapist treatment, combined with exercises done at home between sessions. A longer course may be necessary in more severe cases.
medication if psychological therapy doesn’t help treat your OCD, or if your OCD is fairly severe – usually a type of antidepressant medication called selective serotonin reuptake inhibitors (SSRIs) that can help by increasing the levels of serotonin in your brain
You may need to take the medication for 12 weeks before you notice any effect.
Most people require treatment for at least a year. You may be able to stop if you have few or no troublesome symptoms after this time, although some people need to take medication for many years. Your symptoms may continue to improve for up to two years of treatment.
Don’t stop taking SSRIs without speaking to your doctor first, as this can cause unpleasant side effects. When treatment is stopped, it will be done gradually to reduce the chance of this happening. Your dose may need to be increased again if your symptoms return.
Psychosurgery is used to alleviate symptoms of obsessive-compulsive disorder in patients who do not respond to medications or behavioural therapy.
As per the International OCD Foundation, four types of brain surgery have proven effective in treating OCD. They are listed on the OCD UK website but it was unclear if these are offered
anterior cingulotomy. Which involves drilling into the skull and burning an area of the brain called the anterior cingulate cortex with a heated probe. This surgery has provided benefits for 50 percent of those with treatment-resistant OCD.
. This surgery is similar to the anterior cingulotomy surgery, but doctors operate on a different area of the brain called the anterior limb of the internal capsule. The surgery has succeeded in giving relief to 50 to 60 percent of patients with treatment-resistant OCD.
the gamma knife. This treatment does not involve opening the patient’s skull. Rather, the skull is penetrated by multiple doses of gamma rays. While a single dose of gamma rays will not harm brain tissue, when multiple sources of gamma rays intersect, they create an energy level adequate to destroy targeted brain tissue. The gamma knife procedure has been helpful to about 60 percent of treatment-resistant OCD patients.
deep brain stimulation (DBS). Although this procedure requires opening the patient’s skull, it does not involve destroying brain tissue. Instead, electrodes are placed at strategic points inside the brain and wired to a pulse generator. The battery-powered generator, also called an implantable neurostimulator, sends pulses to the brain. It works in a similar fashion to a pacemaker. So far, only small studies have been conducted with deep brain stimulation, but the response rate is similar to the other surgeries.
Families and OCD Barbara Livingston Van Noppen, PhD Associate Professor, University of Southern California International OCD Foundation Scientific Advisory Board
1. Do not regard OCD as the person’s fault and try not to believe that you or anyone else may have caused it. If the person decides to seek professional help, be supportive of that decision and encourage their determination to recover. Help your family member find the right treatment. The best treatment usually includes medicine, cognitive behaviour therapy, and family education and support.
2. Encourage the person with OCD to persist with their treatment, even when this seems difficult, and show appreciation of any improvement, however small.
3. Learn how to respond if your family member refuses treatment
Bring books, video tapes, and/or audio tapes on OCD into the house. Offer the information to your family member with OCD or leave it around (strategically) so they can read/listen to it on their own.
Offer encouragement. Tell the person that through proper treatment most people have a significant decrease in symptoms. Tell them there is help and there are others with the same problems. Suggest that the person with OCD attend support groups with or without you, talk to an OCD buddy through online support groups, or speak to a professional in a local OCD clinic.
Get support and help yourself. Seek professional advice/support from someone that knows OCD and talk to other family members so you can share your feelings of anger, sadness, guilt, shame, and isolation.
Attend a support group. Discuss how other families handle the symptoms and get feedback about how you can deal with your family member’s OCD. To find a list of support groups in your area, visit www.ocfoundation.org
4. Remember that symptoms may wax and wane. Some days, the person may be able to deal with symptoms better than others. Each person needs to overcome their problems at their own pace, even though this may be a lengthy process.
5. Learn about OCD Education is the first step, the more you learn, the more you will be able to help. You can:
Read books on OCD
Join the International OCD Foundation
Attend OCD support groups
6. Allow the person to explain their problems to you. This will help them to feel less isolated and ashamed of their condition. The symptoms may seem unrealistic and irrational to you, but the fear for the person with OCD, is very real.
7. While supporting the person with OCD, try not to support the obsessions and compulsions. The International OCD Foundations calls this recognising and reducing “Family Accommodation Behaviours” Family Accommodation Behaviours are things families do that enable OCD symptoms. Families are constantly affected by the demands of OCD. Research shows that how a family responds to the OCD may help fuel OCD symptoms. The more that family members can learn about their responses to OCD and the impact they have on the person with OCD, the more the family becomes empowered to make a difference! Here are some examples of these problematic behaviours:
Participating in the behaviour: You participate in your family member’s OCD behaviour along with them. Example: washing your hands whenever they wash their hands.
Assisting in avoiding: You help your family member avoid things that upset them. Example: doing their laundry for them so that it is cleaned the “right” way.
Helping with the behaviour: You do things for your family member that lets them do OCD behaviours. Example: buying large amounts of cleaning products for them.
Making changes in Family Routine: Example: you change the time of day that you shower, or when you change your clothes.
Taking on extra responsibilities: Example: going out of your way to drive them places when they could otherwise drive themselves.
Making changes in leisure activities: Example: your family member gets you to not leave the house without them. This affects your interests in movies, dinners out, time with friends, etc.
Making changes at your job: Example: you cut back on hours at your job in order to take care of your family member.
Note: The worst thing to do is to give reassurance to the person that their fears are unfounded. If you do this, the person will not learn this for themselves and the disorder will persist. Encourage the person to challenge the obsessions and compulsions.
8. People with OCD are often aware of the humorous aspects of their obsessions and compulsions. This awareness can be used to help them distance themselves from the condition. However, resist mocking the person’s symptoms as this may cause additional stress, shame and embarrassment.
9. At home, people with OCD should be encouraged to maintain as normal a lifestyle as possible. Families should not try to adapt their ways of doing things to accommodate the person’s obsessions and compulsions.
10. Remember that OCD is tough for families to deal with. Continue to communicate with each other. Remember also that the family, friends and carers of people with OCD need help and support themselves. Make sure you continue to do things you enjoy and have people to talk to about your own feelings and concerns.
The Harrison School helps children and teenagers struggling with their mental health to continue with their education whilst being treated for the issues that they are experiencing. At the school, we meet Janina who has been diagnosed with depression and has been at the school for four years and is afraid to leave the schools safety.
Devante has been a witness to a life changing traumatic shooting in which the girl he cared about lost her life and he is finding life difficult. He attempts suicide but is stopped and decides to enrol at the Harrison School. Devante is diagnosed with acute stress disorder and he meets Janina. Their friendship helps them both on their journey to recovery.
As a result of a new addition to the Harrison School team is given a select group of students to look after and as a result starts to question Janina’s diagnosis. After investigation and new research it is decided that Janina is not mentally unwell but has been mis-diagnosed because the people around her failed to acknowledge her intellect. Showing that the labels we take on are fluid and can change over time.
Whilst at the Harrison School Devante begins to see that there are others in a similar situation to him, he is not alone and there are other people who are in a worst position than him.
This book shows the differences between different mental health conditions and their durations. It also shows the fluidity of mental health diagnosis and that labels are not necessarily everything and that treating teenagers as people has a huge beneficial effect.
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.
Girl, Interrupted meets Best Kept Secret in this riveting, redemptive coming-of-age story about a young woman who overcomes a troubled adolescence, only to lose custody of her daughter when her mental health history is used against her.
On the surface, sixteen-year-old Lesley Holloway is just another bright new student at Hawthorn Hill, a posh all-girls’ prep school north of London. Little do her classmates know that she recently ran away from home, where her father had spent years sexually abusing her. Nor does anyone know that she’s secretly cutting herself as a coping mechanism…until the day she goes too far and ends up in the hospital.
Lesley spends the next two years in and out of psychiatric facilities, where she overcomes her traumatic memories and finds the support of a surrogate family. Eventually completing university and earning her degree, she is a social services success story—until she becomes unexpectedly pregnant in her early twenties. Despite the overwhelming odds she has overcome, the same team that saved her as an adolescent will now question whether Lesley is fit to be a mother. And so she embarks upon her biggest battle yet: the fight for her unborn daughter.
All Evie wants is to be normal. She’s almost off her meds and at a new college where no one knows her as the girl-who-went-crazy. She’s even going to parties and making friends. There’s only one thing left to tick off her list…</span>
But relationships are messy – especially relationships with teenage guys. They can make any girl feel like they’re going mad. And if Evie can’t even tell her new friends Amber and Lottie the truth about herself, how will she cope when she falls in love?
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.