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

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

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 · 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