Introduction to AutismLesley Johnston RGN. RMN. BN. Cert. Health Informatics
What we will cover today Autism: what it is and is not Autistic spectrum Triad of Impairments How people with autism see the world Facts and figures Communication Introduction to: ◦ Autism and learning disability ◦ Understanding behaviour ◦ Anxiety and strategies for managing anxiety ◦ Challenging behaviour Approaches, therapies and interventions Aspergers and higher education
What is autism?Throughout this session we will use the term autism -although it is well known that autism occurs in differingdegrees of severity and in a variety of forms.The terms Spectrum and/or Continuum of disordersor conditions are commonly used to group peopletogether that have a shared difficulty in making sense ofthe world.Autism is a lifelong developmental disability thataffects the way a person communicates andrelates to people around them. Children and adultswith autism are unable to relate to others in asocially meaningful way.
What is autism cont.Their ability to develop friendships is impaired, as istheir capacity to understand other peoples feelings.People with autism can often have accompanyinglearning disabilities and/or mental health problems.The term spectrum condition means that, while allpeople with autism share certain areas of difficulty,their condition will affect them in different ways.Aspergers syndrome, is believed by many experts tofalls at the higher-functioning end of the autisticspectrum.
Triad of ImpairmentsAll people with autism (and Aspergers) have impairmentsin social interaction, social communication andimagination. This is referred to as the triad ofimpairments – it is the degree that varies: Social interaction (difficulty with social relationships, for example appearing aloof and indifferent to other people); Social communication (difficulty with verbal and non-verbal communication, for example not really under-standing the meaning of gestures, facial expressions or tone of voice); and Flexibility in thinking and behaving (difficulty in the development of play and imagination, for example having a limited range of imaginative activities, possibly copied and pursued rigidly and repetitively).
It can be hard to create awareness ofautism as people with the condition donot look disabled: parents of childrenwith autism often say that other peoplesimply think their child is naughty; whileadults find that they are misunderstood.All people with autism can benefit from atimely diagnosis and access to appropriateservices and support.
Autism and learning disabilitiesPeople with Asperger syndrome and otherforms of autism at the higher functioning endof the spectrum can have normal intellectualcapabilities, and some are of above averageintelligence.However, many people with autism also havesignificant intellectual disabilities but the twodo not necessarily go hand in hand.Test: IQ 70
Communication For people with autistic spectrum disorders, body language can appear just as foreign as if people were speaking ancient Greek!What do we mean by ‘body language’?
As soon as we meet a person we makejudgements about them. From their facialexpression, tone of voice and body language wecan usually tell whether they are happy, angry orsad and respond accordingly.At one end of the spectrum People withAsperger syndrome can find it harder to readthe signals that most of us take for granted. Thismeans they find it more difficult to communicateand interact with others which can lead to highlevels of anxiety and confusion.
People further along the autism continuumhave difficulties with both verbal and non-verbal language. Many have a very literalunderstanding of language, and think peoplealways mean exactly what they say.They can find it difficult to use or understand: facial expressions or tone of voice jokes and sarcasm common phrases and sayings; an example might be the phrase Its cool, which people often say when they think that something is good, but strictly speaking, means that its a bit cold.
Try to adapt your communication -speak simply and directly, and sayexactly what you mean. Also, wheneverpossible, include visual cues to yourmeaning.
Dispelling the mythsWhilst autism, as a term, was only defined50 years ago, it has probably been a part ofthe human condition throughout history.However, newly defined disorders inevitablylead to confusion, so here are a fewpointers to what autism is and what it isnot:
What it is A developmental disorder involving a biological or organicdefect in the functioning of the brain;Occurs on average in four times as many males as females; 17males to 1 female for high functioning/Asperger syndrome; 1male to 1 female for profound learning disabilities.A spectrum disorder comprising individuals with profoundlearning difficulties through to people with average or aboveaverage IQ;Associated with known organic causes e.g. maternal rubella,tuberous sclerosis;Associated with epilepsy or seizure disorders in one third ofindividuals at adolescence;In many cases genetically linked (often a family member hasautism)Associated with unusual responses to sensory stimuli;A life-long disability with a need for correspondingly life-longsupport in most cases.
What it is notThe result of emotional deprivation or emotionalstress;A wilful desire to avoid social contact;Due in any way to parental rejection or coldparenting;In any way class related;A mental illness;Misunderstood genius (although in a fewcircumstances some individuals have specialabilities in narrow areas);Curable (although improvements can be made inall cases).
How common is it?Autism is much more common than manypeople think. There are over half a millionpeople in the UK with autism - thatsaround 1 in 100.If you include their families, autism touchesthe lives of over two million people everyday.
More facts and figuresOver 40% of children with autism have been bullied at school.Over 50% of children with autism are not in the kind of schooltheir parents believe would best support them.One in five children with autism has been excluded fromschool, many more than once.Nearly two-thirds of adults with autism in England do not haveenough support to meet their needs.At least one in three adults with autism are experiencingsevere mental health difficulties due to a lack of support1.Only 15% of adults with autism in the UK are in full-time paidemployment.51% of adults with autism in the UK have spent time withneither a job, nor access to benefits, 10% of those having beenin this position for a decade or more.61% of those out of work say they want to work.79% of those on Incapacity Benefit say they want to work.
How does the world appear topeople with autism?
“If I get sensory overloadthen I just shut down; you get whats known asfragmentation... its weird, like being tuned into 40 TV channels”.
People with autism have said that the world, tothem, is a mass of people, places and eventswhich they struggle to make sense of, and whichcan cause them considerable anxiety.In particular, understanding and relating to otherpeople, and taking part in everyday family andsocial life may be harder for them.Other people appear to know, intuitively, howto communicate and interact with each other,and some people with autism may wonder whythey are different
Working with people with autism: meet Scott and MarieKey messages for practice1) Autism affects people in a huge variety of ways.2) Professionals and others need to have empathy and to understandthe perspective of the person with autism.3) People with autism who are in employment often need someadditional support.4) Professionals should use the expertise of the person with autismand their family when providing support.5) Good communication with people with autism is vital. This includesrecognising behaviour triggers, using visual prompts and speaking inshort, clear sentences.6) Society disables people with autism, so we all need tomake adjustments to include them.
What adjustments can WE make? Current Reality versus Desired Future________________________________________________In groups, list the CURRENT REALITY of how you behave and act inwork in the context of working with people who suffer with autisticspectrum disorder. Why are you doing this job? Being honest, what are your priorities in work? What worries you? Do you have enough time………? How do you react to certain behaviours? Are there things you feel you don’t do well enough?__________________________________________________________________________________We will come back to this later………
Understanding behaviourPeople with autism or Asperger syndrome mayappear to behave unusually. There will generally bea reason for this: it can be an attempt tocommunicate, or a way of coping with a particularsituation.Knowing what causes challenging behaviour canhelp you to develop ways of dealing with it.
AnxietyAnxiety is a real difficulty for many adults withautism or Asperger syndrome. It can affect aperson psychologically and physically. There aredifferent ways you can manage anxiety, fromkeeping a diary to learning relaxationtechniques and getting support from others ina similar situation.Anxiety can happen for a range of reasons andpeople with autism or Asperger syndrome canvary in their ability to cope with it.
To understand emotion you need an imagination. Oneof the areas of difficulty for people with autism is notbeing able to imagine things, so understanding emotionscan be difficult for them. People at the higher end of theautistic spectrum may understand some emotions andrecognise the feelings that are associated with them. Byhelping someone to understand anxiety, you can helpthem to manage it better.Resources such as those sold by Incentive Plus as wellas the Autism Research Centres CD ROM, Mindreading, can help teach someone with autism aboutemotions.Anxiety can affect both the mind and thebody, and produce a range of symptoms.The psychological and physical symptoms of anxiety areclosely linked and so can lead to a vicious cycle that canbe difficult to break. ……………..
Psychological Physical symptoms ofsymptoms of anxiety: anxiety: easily losing patience excessive thirst difficulty concentrating stomach upsets thinking constantly about loose bowel movements the worst outcome frequent urinating (going difficulty sleeping to the loo) depression periods of intensely becoming preoccupied pounding heart with or obsessive about muscle aches one subject. headaches dizziness pins and needles tremors.REMEMBER: it is extremely important to get medical advice to rule out any medical conditions.
Strategies for managing anxiety Try and be aware of what makes them anxious and how best to help them manage certain behaviours. Keeping a diary in which they write about certain situations and how these make them feel may help them to understand their anxiety and manage it better.Time and How anxious?date Situation How I felt (out of 1 to 10)
Create an anxiety plan when someone with autism isfeeling positive about things. This is a list of things andsituations that cause anxiety as well as solutions andstrategies they can use to help them manage theiranxiety levels. The plan can be adapted, depending uponhow well someone understands anxiety………..Situation Symptoms of Solution anxietyGoing on the bus. Hearts beats fast; Have stress ball in sweat and feel sick. pocket. Squeeze the ball and take deep breaths. Listen to music.
Relaxation techniques –what the National Autistic Society says
Dealing with challenging behaviourThis is a session all of its own…….Here is just one example.You work with an adult who becomesvery aggressive when the TV schedulefor his favourite programme changes.What can you do?
Approached, therapies andinterventionsWhile there is no cure for autism, there are anumber of approaches that people use to helpwith various difficulties they may experience. Some people make adjustments to their diet, for example, while others may benefit from speech and language therapy. Different approaches have been known to work for some people with an autism spectrum disorder, but they have not been evaluated on a long-term basis.
Beware!!Before using any particular approach, find out as muchinformation as you can about it. Any approach should be forthe benefit of the person with autism and based on a multidisciplinary decision. It must build on their strengths, help todiscover their potential, increase motivation and provideopportunity.Ask yourself: What does the approach claim to do? How does it work and who will it benefit? How was it developed? How many people have been treated and what was the outcome?
SO…….What adjustments CAN we make?Back to Current Reality versus Desired Future_________________________________________You have listed the CURRENT REALITY of how youbehave and act in work. Why are you doing this job? Being honest, what are your priorities in work? What worries you? Do you have enough time………? How do you react to certain behaviours? Are there things you feel you don’t do well enough?_________________________________________________________________________Now - list the DESIRED FUTURE against each point.
….the last word goes to Dr Asperger “Not everything that steps out of line, and thus abnormal, must necessarily be inferior.” - Hans Asperger (1938) Thank you for listening