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Dealing with the Ignorance of Autism

I am not ashamed of my autism. Autism is a part of me and I don’t want it cured. Yes, most days it makes life much more difficult than it should be. It intensifies sounds and sights, it makes me socially awkward, it sometimes makes me feel like an outcast. It makes things confusing; I misread things or process things poorly.  It causes extreme meltdowns where I become non-verbal, child-like and engage in self-injurious behaviours. However, it also gives me a unique perception of the world. It gives me motivation to pursue interests. It develops my love of music and learning the piano. It makes me empathetic, aware of others and surroundings and an outlook on life that no neurotypical person would have.

Unfortunately, Autism awareness in this world is poor. When I first got diagnosed with Autism in October 2017, mostly people were accepting. There were a few who said ‘well, you don’t look autistic’ but they were simply uneducated. Most people treated me no different but began to see why I had seemed so different my whole life. I thought Autism acceptance and awareness was good…until things began to go wrong.

When you need support for Autism there is very little knowledge. My friends know more about Autism and autistic meltdowns and behaviours more than professionals do…and that is truly frightening. When a paramedic misreads stimming behaviour as trying ‘to be violent to others’ and as a ‘mental health case’…or a ER nurse puts your ‘mannerisms’ down to ‘unusual behaviour’ and spends the next 15 minutes trying to understand from your friend what autism and stimming is, it is honestly disheartening. These are people that will come across many autistic people in their day to day lives. Paramedics, nurses, doctors, first aid staff and university staff….all who should know at least what Autism is but absolutely have no idea…from my experiences.

Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways. Some autistic people also have learning disabilities, mental health issues or other conditions, meaning people need different levels of support.

The term “stimming” is short for self-stimulatory behaviour and is sometimes also called “stereotypic” behaviour. In a person with autism, stimming usually refers to specific behaviours that include hand- flapping, rocking, spinning, or repetition of words and phrases.  People with autism stim to help themselves to manage anxiety, fear, anger, excitement, anticipation, and other strong emotions. They also stim to help themselves handle overwhelming sensory input (too much noise, light, heat, etc.). There are also times when people stim out of habit, just as neurotypical people bite their nails, twirl their hair, or tap their feet out of habit. At times, stimming can be a useful accommodation, making it possible for the autistic person to manage challenging situations. When it becomes a distraction, creates social problems, or causes physical harm to self or others, though, it can get in the way of daily life.

PLEASE be Autism aware and educate yourself on ‘normal’ autism behaviours. People in authority should not have to put autistic people in danger because they lack understanding or knowledge…it only takes a small amount of time to listen and learn. 

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Myths about Autism

Although over 700,000 people in the UK are autistic (more than 1 in 100 people), false and often negative perceptions about the condition are common.

This lack of understanding can make it difficult for people on the autism spectrum to have their condition recognised and to access the support they need. Misconceptions can lead to some autistic people feeling isolated and alone. In extreme cases, it can also lead to abuse and bullying.

Autism affects more than 1 in 100 people – fact. Over 700,000 people in UK are autistic, which means that 2.8m people have a relative on the autism spectrum.

People tend to ‘grow out’ of autism in adulthood – myth. It’s a lifelong condition – autistic children become autistic adults.

Autism affects both boys and girls – fact. There is a popular misconception that autism is simply a male condition. This is false.

Some autistic people don’t speak – fact. Some autistic people are non-verbal and communicate through other means. However, autism is a spectrum condition, so everyone’s autism is different.

Autism is a mental health problem – myth. Autism is a developmental disability. It’s a difference in how your brain works. Autistic people can have good mental health, or experience mental health problems, just like anyone else.

All autistic people are geniuses – myth. Just under half of all people with an autism diagnosis also have a learning disability. Others have an IQ in the average to above average range. ‘Savant’ abilities like extraordinary memory are rare.

Everyone is a bit autistic – myth. While everyone might recognise some autistic traits or behaviours in people they know, to be diagnosed with autism, a person must consistently display behaviours across all the different areas of the condition. Just having a fondness for routines, a good memory or being shy doesn’t make a person ‘a bit autistic’.

[Credit: NAS]

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Making it two decades!

Tomorrow is the day I turn 20 years old. I have officially survived and lived two decades. It’s crazy to think how fast time flies; how many birthdays I’ve celebrated; how many things have happened and changed. How much I’ve changed.

At 11 years old, I didn’t think I’d survive to be 12. Each year since then has been a battle. Each year since then has been an absolute roller coaster. Joy, change, hurt, sadness, depression, anxiety, happiness, fear, shame. At 15 years old, I cried myself to sleep because I didn’t want to celebrate my 16th birthday and become ‘grown up’. Now I’m sat here, the night before my 20th birthday and I won’t cry myself to sleep. Life isn’t a walk in the park. I’m far from where I want to be but much further than I have been.

Tomorrow I will wake up and celebrate that I have actually made it two decades in this crazy world. Two decades of life to which half has been filled with mental illness…

I will not give up.

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Is Autism Different in Girls?

Is Autism Different in Girls – Video

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.

 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.  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.

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.

Evidence suggests that girls have more active imaginations and more pretend play. 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.

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.

Signs of autism in girls

Social interaction:

  • boys with ASD tend not to appear motivated to be socially interactive, but girls on the spectrum do. However, girls have a history of failure in achieving and maintaining friendships
  • girls gravitate towards older girls, who tend to mother them and act as a form of social “protection”
  • girls may be socially immature and make a preference to play with much younger children who are not challenging and would allow the child with ASD to dominate play, giving them the predictability and control children with autism crave
  • girls with Asperger’s may “adopt” a less able peer, perhaps someone with a learning difficulty, who may themselves be marginalised so they are open to being dominated by the child with ASD
  • girls with Asperger’s may be unnecessarily dependent on their mother (or other primary carer) whom they regard as their best friend and confidante in a social world which they find challenging and frightening.

Social communication:

  • boys engage in disruptive behaviours, whereas girls may be persistently “ill” to gain what they want or control their situation
  • girls with ASD tend to act passively and ignore daily demands, while boys become disruptive in response
  • girls appear more able to concentrate than boys, who become distracted more easily and can be disruptive
  • girls tend to learn social behaviours by observation and copying, which can disguise their social deficits
  • girls may find the idea of social hierarchy difficult, so they can respond inappropriately to people in authority, such as teachers
  • children with ASD of both sexes need to learn the rules of “small talk” which they often find incomprehensible as a pastime. Girls’ difficulties tend to be masked by their passive behaviours and ability to mimic without understanding.

Social imagination:

  • parents may perceive their daughter as being non-specifically “odd”, but without being able to pinpoint the cause
  • imaginative play does exist, but it is intense in nature, often focused on stereotypical female interests, such as dolls, make-up, animals and celebrities – which is why girls with ASD may not seem that different to females not on the spectrum. The key is the intensity and quality of these special interests, which are exclusive, all-consuming and experienced in detail
  • children with ASD can engage in repetitive questioning well beyond the age that those who are not on the spectrum would normally do. They can exhibit poor empathic skills and a lack of social interest. They can also seem disinterested in the classroom and exhibit immature, impulsive and unusual behaviours. An inability to “move on”, even with basic matters, can be common – for example, not being happy to throw away old toys or clothes which the child has long since grown out of. This “cluttering” behaviour can outline their difficulties with change. While such types of behaviour may be common to both sexes, the ways in which they present can be different for boys and girls.

It seems that girls on the autistic spectrum may be less noticeable than boys because they are less disruptive and have an ability to mimic behaviours. However, they lack social understanding and any deep knowledge of language. This becomes increasingly obvious at secondary school level, when there are no younger children to associate with, when peer groups are more mixed and any “protection” may have dissolved. Additionally, multiple stimuli (such as crowds in corridors or screams in playgrounds) and changes to routines which occur at secondary education can increase individual anxiety greatly. Adolescence, involving unstoppable changes, such as menstruation and the growth of breasts and body hair, can profoundly affect girls with ASD, heightening anxieties due to lack of control over what is happening.

Mental health issues for girls

Anorexia nervosa has been called “female Asperger’s” because around one fifth of girls who present with anorexia have traits which are peculiar to the autistic spectrum; around 20 to 30 per cent of anorexic patients are perfectionists and demonstrate rigid modes of thinking and behaviour, which are common autistic traits. Anorexia offers girls with ASD what they perceive to be a positive outcome because lack of nutrition prevents menstruation and physical development.

It is not until puberty that girls’ social difficulties become more obvious, particularly as they enter secondary school when they can become the subject of bullying or can be generally marginalised and perceived as strange. Unlike boys, they become withdrawn, depressed and quiet, rather than aggressive.

Profound anxieties may be demonstrated in altered behaviours, lower grades at school, poor sleep patterns, low mood/depression and obsessive behaviour.

Research from 2011 found that many women who were later diagnosed as being on the autistic spectrum initially were thought to have learning difficulties, personality disorders, obsessive compulsive disorder or eating disorders. This differential diagnosis could be related to lack of awareness of how ASD present in females.

All research suggests that an early diagnosis of ASD, followed by appropriate interventions, will optimise the person’s life chances by increasing independence, understanding and accumulation of language and social abilities. To date, the ways in which females present with Asperger’s have not been thoroughly examined or used as the basis for diagnostic tools, which continue to be male dominated.

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autism · eating disorder · journey to recovery · mental health · mental health blogger · mental illness · personal journey · Uncategorized

What’s It Like to Live with Autism?

Living with Autism can be a struggle sometimes, but theres not much that sets us apart from everyone else.

We are all different. Some differences are easy to see – height, gender, hair style, eye colour and so on. Some differences can’t be seen – our favourite foods, fears or special skills. Interestingly, the way we see the world is also different.

All brains work differently. The brain is the body’s computer and works differently for all of us. It controls how we learn which is why we are all good at different things. It also controls how we feel which is why we all feel different emotions. It also controls how we communicate. Sometimes the brain is connected in a way that it affects senses, and how we perceive and read situations and interactions. This is known as Autism.

Many people have autism, so its likely you know someone who is autistic and for this reason its useful to know a little bit about autism. The special wiring inside an autistic brain can sometimes make us good at tasks you find difficult such as maths, drawing or music. It can also do the opposite and activities ‘normal’ people find easy are incredibly difficult to us, such as making friends. The senses constantly send information to the brain about our surroundings and other people, however when the brain and senses don’t communicate well, the brain can become overwhelmed and confused, affecting how we see the world.

We all develop behaviours to help us feel calm and comfortable. ‘Normal’ people may look away, fidget, bite your nails and so on. Equally, autistic people develop behaviours that help us cope with intense moments. These actions may seem unusual but its our way of feeling calm. It’s known as stimming. When it happens, it means we’re having a hard time. The kind thing to do is not to give us a harder time by getting cross, ignoring us or mocking us.

People with autism are not ill or broken, we simply have a unique view of the world, and with a little support from our friends we might just be able to share that feeling with you!

Autism can make amazing things happen!

Amazing Things Happen – Autism Video

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Autism and Self-Injurious Behaviours

Self-injury can be one of the most distressing and difficult behaviours that parents, carers, family members and people with autism themselves may face.

Sometimes referred to as self-harm, self-injurious behaviour is any activity in which a person inflicts harm or injury on themselves. About half of people with autism engage self-injurious behaviour at some point in their life. It can take many different forms, including:

  • head banging (on floors, walls or other surfaces)
  • hand or arm biting
  • hair pulling
  • eye gouging
  • face or head slapping
  • skin picking, scratching or pinching
  • forceful head shaking.

People across the spectrum and of all ages may engage in self-injurious behaviours at some point. People who engaged in self-injurious behaviours as children may return to these as adults during times of stress, illness or change.

Usual behavioural intervention approaches are not always appropriate. Seek professional guidance for any self-injurious behaviour which is difficult to manage or resistant to intervention, or for any behaviour which places the person at risk of harm.

Causes

The reasons a person engages in self-injurious behaviours can be wide and varied, and will often involve a complex interaction between multiple factors. People with learning disabilities told Self-Injury Support that they self-injure when:

  • they feel they are not listened to
  • they have been told off
  • they have little or no choice about things
  • they have been bullied
  • they are involved in arguments, or hear other people arguing
  • they are feeling unwell
  • they have memories of a bereavement
  • they have memories of abuse.

MEDICAL OR DENTAL PROBLEMS

People with autism may have difficulty communicating to others that something is wrong physically and particular self-injurious behaviours (such as ear slapping or head banging) may be their way of coping with pain or communicating discomfort.

MENTAL HEALTH ISSUES

Some self-injurious behaviour may indicate underlying mental health issues such as depression or anxiety.

REPETITIVE BEHAVIOUR

Repetitive behaviours, obsessions and routines are common in people with autism, and some forms of self-injury may be expressions of this feature.

DEVELOPMENTAL STAGES

Some self-injurious behaviour may be persisting remnants of earlier motor behaviours which occur during particular developmental periods (eg hand mouthing which may continue beyond infancy).

COMMUNICATION

Sudden self-injurious behaviour can get a very quick response from other people, and many such behaviours occur in people who have no other functional way of communicating their needs, wants and feelings.

  • Head slapping, or banging the head on a hard surface, may be a way of communicating frustration, getting a preferred object of activity, or reducing demands.
  • Hand biting may help someone cope with anxiety or excitement.
  • Skin picking or eye gouging may be a response to lack of stimulation or boredom.

LEARNED BEHAVIOUR

The person may learn that self-injurious behaviour can be a very powerful way of controlling the environment. A behaviour (eg head slapping) which was initially a response to physical pain or discomfort could eventually become a way of avoiding or ending an undesired situation (eg turning the television off, interrupting an argument taking place nearby).

Reactive strategies

Appropriate responses will vary according to the behaviour, but here are some pointers on what to do when the behaviour is happening. It is important when using any of these strategies that the person is also provided with opportunities to develop skills to communicate their needs more appropriately and to self-regulate stress and anxiety levels.

RESPOND QUICKLY

Intervene early, and respond quickly and consistently to incidents of self-injury. Even if the behaviour serves the function of gaining attention from others, it is never appropriate to ignore severe self-injurious behaviour.

KEEP RESPONSES LOW KEY

Limit verbal comments, facial expressions and other displays of emotion, as these may inadvertently reinforce the behaviour. Try to speak calmly and clearly, in a neutral and steady tone of voice.

REDUCE DEMANDS

The person may be finding a task too difficult or that they are unable to complete the activity at that time. Come back to the activity again later when the person is feeling calmer.

REMOVE PHYSICAL AND SENSORY DISCOMFORTS

Remove unpleasant sensory input. Provide relief for physical discomfort (eg pain killers) if a medical professional has advised this after seeing the person.

REDIRECT

Tell the person what they need to do instead of the self-injurious behaviour, eg “David, hands down”. Use visual cues such as picture symbols to back up instructions. Redirect to another activity that is incompatible with the self-injury (eg an activity that requires both hands) and provide praise and reinforcement for the first occurrence of appropriate behaviour, eg “David, that’s excellent playing with your train”.

PROVIDE LIGHT PHYSICAL GUIDANCE

If the person is having difficulty stopping the behaviour, provide light physical guidance, eg gently guide their hand away from their head, using as little force as possible. Immediately try to redirect attention to another activity and be prepared to provide physical guidance again if the person attempts to re-commence self-injurious behaviour. This approach must be used with extreme caution as it may escalate the behaviour or cause the person to target others.

USE BARRIERS

Place a barrier between the person and the object that is causing harm. For head slapping, place a pillow or cushion between the person’s head and their hand. For hand or arm biting, provide an alternative object to bite down on. For head banging on a hard surface, place a cushion or pillow between the surface and the person’s head. You can get removable padding that is placed temporarily on the floors or walls to minimise injury.

CONSIDER PHYSICAL RESTRAINTS

Some self-injurious behaviour can place the person at serious risk of harm. In these instances, it may be appropriate to explore the use of physical restraints such as arm restraints, gloves or helmets. These may also reduce the sensory experience and frequency of the behaviour.

However, physical restraints are very restrictive and should always be used under the guidance of a specialist to ensure they are used safely and appropriately, and with a plan to fade out their use over time.

Physical restraints do not address the cause of the behaviour, so they must never be used in isolation without teaching the person new skills which address the function of the behaviour.

CALL FOR HELP

In extreme circumstances or emergencies, call 999 for assistance.

Preventative strategies

Here are some ideas about how to prevent self-injurious behaviours.

RULE OUT MEDICAL AND DENTAL CAUSES

Visit the GP or dentist and seek a referral to a specialist if needed. Bring along notes about when the behaviour happens (ie what time of day and in which situations), how often it happens, when it first started, and how long it lasts.

THINK ABOUT THE FUNCTION OF THE BEHAVIOUR

Complete a behaviour diary, which records what is occurring before, during and after the behaviour, or a functional analysis questionnaire, to help you to understand the purpose of the behaviour. Make notes on the environment, including who was there, any change in the environment and how the person was feeling.

INCREASE STRUCTURE AND ROUTINE

Establish a clear daily routine to increase predictability and thereby reduce anxiety. Try to build a range of activities into the person’s routine to minimise boredom and restrict opportunities for the person to engage in self-injurious behaviour. Make plans for difficult times of the day. Increase structure and provide additional supervision and support to the person during these periods or activities. People with Pathological Demand Avoidance may need a less directive and more flexible approach than others on the autism spectrum.

PROVIDE SENSORY OPPORTUNITIES

Find alternative activities that provide a similar sensory experience and build these into the daily routine. Jumping on a trampoline or swinging on a swing may provide needed stimulation to the vestibular system (that head shaking or slapping may have previously provided). Providing the person with a bum bag of edible or safe objects to chew on that provide different sensory experiences such as gum, carrots, raw pasta or sultanas may reduce the need for hand or arm biting.

INTRODUCE COMMUNICATION TOOLS

Support the person to use other ways of communicating their wants, needs and physical pain or discomfort, eg by using visual supports such as pictures of body parts, symbols for symptoms, or pain scales, pain charts or apps.

REWARD APPROPRIATE BEHAVIOURS

Provide frequent encouragement to the person for engaging in appropriate behaviour and for periods in which they did not engage in the self-injurious behaviour. This will help the person learn that other, more appropriate behaviours bring positive outcomes.

Rewards can take the form of verbal praise and attention, preferred activities, toys, tokens or sometimes small amounts of favourite foods or drinks. Ensure that you clearly name the behaviour that you are rewarding, eg “Jane, that’s good waiting!” and ensure that rewards are provided immediately after the behaviour that you wish to encourage eg “You can spend 10 minutes on the computer now”.

It should be noted that some people with autism do not enjoy social attention. In these circumstances, verbal praise can cause distress and actually stop the person engaging in the desired behaviour in the future.

MEDICATION

Medication may help to reduce the frequency of self-injurious behaviour for some people. As with physical restraints, medication should be seen as a last resort approach to management and again, should never be used without teaching new skills and consulting a medical specialist.

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[Source: National Autistic Society]

autism · mental health · mental health blogger · mental illness · personal journey · savannah lloyd · Uncategorized

Living with Autism: World Autism Day

April the 2nd 2017 is World Autism Awareness Day 2017!

Autism is a lifelong developmental disability that affects how people perceive the world and interact with others.

Autistic people see, hear and feel the world differently to other people. If you are autistic, you are autistic for life; autism is not an illness or disease and cannot be ‘cured’. Often people feel being autistic is a fundamental aspect of their identity.

Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways. Some autistic people also have learning disabilities, mental health issues or other conditions, meaning people need different levels of support. All people on the autism spectrum learn and develop. With the right sort of support, all can be helped to live a more fulfilling life of their own choosing.

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 All my life, I knew I was “different.” As a child, I was described as shy. I had “temper tantrums” frequently. I found it difficult to make friends, couldn’t make eye contact, found it hard to speak to others, and struggled with both social skills and communication skills — even confidence. I remember going through primary school with severe anxiety. As I went through each year, it became harder and harder to make friends. I remember feeling so different from my peers that I tried to change myself in order to be accepted. Eventually, as an 11-year-old, I was diagnosed with mental health difficulties. I let myself accept the reason I was so different was because of the difficulties associated with my mental illnesses.

That was until my mental health disability adviser turned to me one day during one of our meetings and mentioned the word “autism.” Of course, I had heard of autism. As a student who is training to be a special needs teacher, I have come across many children who have been diagnosed with autism. I have done academic research and even essays on the disorder. So when my disability adviser turned to me and mentioned the word in relation to myself, I paused for a second. In this stigmatised world, autism may be seen as something most often associated with children. Many of the children I had come across with autism faced challenges and most were nonverbal. Though I struggle with everyday tasks, I have always put this down to my mental health challenges.

Despite my doubts, my disability adviser handed me an AQ-10, an autism-spectrum quotient questionnaire, to fill in. I scored 10 out of 10. An autism referral is strongly suggested when a person scores six or above. Once she had my consent, she registered me for a referral with an autism assessment charity, and the journey began. I realised most of the behaviours I had put down to my mental illnesses were pretty consistent with those associated with autism spectrum disorder. Although I communicate, I have difficulty reading expressions or body language. Although I know you’re there, I cannot make eye contact. I am hyper-aware of my senses; I am either too stimulated or under-stimulated, which leads to repetitive movements known as stimming (rocking, hand-flapping, knee-bouncing) and meltdowns that last for hours. I like tactile objects and explore with my hands. I cannot deal with social gatherings or being outside of the house. I cannot ride public transport or leave the house effectively. People sometimes feel I am selfish or short-fused; I have meltdowns when I cannot deal with my emotions and struggle to understand when you are not OK. Time is a big thing for me. Routines and timetables are the centre of my life. I cannot hold down a job, despite being able to do it. Though it may not appear to be so, I struggle every single day.

Autism is a broad spectrum. On March the 22nd 2017 I was diagnosed with informal Autism and Attention Deficit Disorder. A final paper diagnosis assessment will be in the next few months.  However, I feel already I have learned so much about myself through this that I had never learned before. I feel as though autism explains my life, and I am not ashamed of that.

Having a diagnosis of autism does not limit the possibility of being something amazing.

I may be different, but I am not less.

#autismawareness