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

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

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 · 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

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

World Autism Awareness Week [2017]

The 27th March to the 2nd April 2017 is World Autism Awareness Week.

The term ‘autism’ is used here to describe all diagnostic profiles, including Asperger syndrome and Pathological Demand Avoidance (PDA).Without understanding, autistic people and their 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.

70% of autistic adults say that they are not getting the help they need from social services. 70% 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.

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What is Autism?

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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How can you help?

You can help autistic people and their families by:

  • spreading understanding about autism – sign up to support the National Autistic Society’s Too Much Information campaign
  • donating to the National Autistic Society so they can continue to give millions of people information and advice about support
  • Talking about autism on social media and to friends and family
  • Sharing this blog post

 

autism · autism sensory bag · journey to recovery · mental health · mental health blogger · mental illness · personal journey · sensory bag · Uncategorized

Savannah’s Sensory Bag

After a few close together meltdowns these past few weeks, I’ve realised that perhaps the majority of people around me do not know how to handle this situation. If you’ve read this and still feel confused, I’ll explain a meltdown.

It’s basically getting overloaded with too much information and the only way I can cope with this or to regulate my emotions is to completely shut down and stim (repetitive behaviours such as rocking, verbal sounds, hand flapping etc). In these meltdowns I pretty much turn into a toddler – mostly non-verbal, no eye contact, no compliance with direction and self-destructive behaviours.

Signs of a sensory overload or meltdown include:

  • Irritability
  • “Shuts down”, or refuses to participate in activities and/or interact with others
  • Avoids being touched or reaches out for touch
  • Gets agitated or upset
  • Covers eyes around bright lights
  • Makes poor eye contact
  • Covers ears to close out sounds or voices
  • Complains about noises that do not affect others
  • Has difficulty focusing
  • Over-sensitivity to touch, movement, sights, and/or sounds
  • Has trouble with social interactions
  • Extremely high or extremely low activity levels
  • Muscle tension
  • Stimming – repetitive behaviours such as rocking, hand flapping and skin picking
  • Fidgeting and restlessness
  • Panic attacks
  • Angry outbursts
  • Sleeplessness/fatigue
  • Difficulty concentrating

So now you know what my meltdowns are, you’re probably still a little uncertain on what you have to do. This is why I’ve created a sensory bag that contains everything that will keep me calm and help shorten the meltdown. See below for some useful tips.

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  1. Do not stop any stimming behaviours – they help me regulate my emotions. Only intervene when I could possibly cause danger to myself. If I am rocking too close to a wall, move me instead of stopping me rock, for example.
  2. Understand that there may not be a reason for my meltdown. If I cannot give an explanation, be at peace with that.
  3. Sit close to me or even hold me unless I resist this (depends on my mood). Deep pressure against the skin combined with individual input often calms the nervous system in places such as the legs or the hands. Constantly reassuring and pressure to these parts of the body allows me to know you’re there whilst keeping me with reality.
  4. Whenever possible – go for my sensory bag! If its not on me, it will be in my room. These items will calm me. There will be communication cards in here that will help me communicate with you when I become non-verbal.
  5. Talk everything Gruffalo. I am utterly obsessed and in a meltdown the Gruffalo becomes an anchor. Find the story on youtube and play it for me –  Find it here. My sensory bag contains the books – let me read them. If you don’t have the books, encourage me to say them (I know them off by heart).
  6. Let me walk, run or spin. Follow me as I tend to wander. This lets me release my energy.
  7. I may have panic attacks during meltdowns. Watch out for fast breathing.
  8. Know the meltdown will pass and I’ll return to normal 🙂
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Gruffalo books, thinking putty, ear defenders, sensory bottle, chewys, tangles, fidget toy, communication cards (unpictured), blanket (unpictured) and gruffalo teddy  (unpictured).
journey to recovery · mental health · mental health blogger · mental illness · personal journey · Uncategorized

I was REALLY sick…

I was on instagram last night when I went onto my instagram profile. I decided to just stroll through my pictures and found some from 2014/2015. For those who know me, you’ll understand that during this time I was in the depths of my eating disorder. At the time, I didn’t really know this. I thought I was okay. I thought I was better than I’d ever been. How wrong I was though. June 2014 consisted of doctors appointments, hospital appointments, blood tests, scans, meetings with college, intervention from community mental health teams and social services. My weight was drastically dropping by each day. The calories kept getting lower and lower.

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Whilst going through those pictures last night; I had the realisation that I was actually really sick back then. How I had managed to feel so healthy I have no idea. How did I survive on no calories for a week? How did I manage to exercise every waking hour of the day?

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I knew that I was sick, I just don’t think I realised how sick I was. I thought I was getting healthy and stronger, not unhealthy and weaker. I remember getting every single illness going; my immune system was very weak. I was always cold yet I still took freezing showers. My muscles always ached and bruised but I would walk for hours on end.

All I wanted to do was sleep and food plagued every single thought.

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Anorexia is such a wretched disease.

It stops its victims even noticing theres something wrong. It refuses to let them see their true self or feel any sort of happiness.

Anorexia is strong, but Savannah is stronger.

autism · grief · journey to recovery · mental health · mental illness · personal journey · Uncategorized

“You asked me before if I was coping…”

So many emotions…so much pain.

Sigh.

I know how life can turn on you sometimes. How it can make you feel…lonely. Scared. Life can be so cruel sometimes….I can’t handle it. I don’t know what to do. You asked me before it I was coping. I’m not coping. Not at all.
I distanced myself from my friends. I distanced myself from everyone. It doesn’t go away. It happened weeks ago. It might as well be minutes ago. Because it doesn’t go away. I don’t break down in tears anymore. Not much…

You put me through hell..but I survived.