Getting It Right for Adults on the Autistic Spectrum Sarah Hendrickx

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w www.asperger-training.com
t 01273 711258
Getting It Right for Adults on the Autistic
SpectrumSarah Hendrickx
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Where We Are

• Low understanding of autism amongst many
  professionals
• GPs
• Psychiatrists
• Teachers
• Care staff
• Managers
• Social Workers
• Employers
• General public

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Where We Are

• Autism Act (2010)
• National Autism Strategy Consultation
• Local Authorities consultations
• Development of local Autism Strategies
• Implementation of local Autism Strategies
• Decisions being made (largely) by non-AS people
• Commitment to improving autism services
• Difficult financial climate/public sector cuts
• Disability benefit assessment changes

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Where We Are

• People having to pay privately for expertise as
  no funded provision
• Lack of faith in some adult mainstream services
• Lack of specialist mental health provision
  (counselling)
• Increasing adult diagnosis
• Increasing understanding

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Reasonable Adjustments

• Legal requirement (Equality Act 2010)
• Reasonable is open to interpretation
• Adjustments must go as far as is reasonably
  possible
• Can apply to things such as
• Physical access to buildings
• Staff training
• Level and type of support
• Equipment software, lighting, chairs,
  headphones etc.
• In school exams, hours, time-out, seating,
  LSAs,
• In work hours, place of work, tasks, training

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Back to Basics

• People with ASC experience the world differently
• This may logically lead to a person behaving
  differently
• Assumptions about what a person wants or needs
  may be based on non-AS assumptions of a
  fulfilling life (friends, career, choice, social
  status)
• These assumptions may be wrong.

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Adolescence

• Change in body - hormones
• Changing nature of friendship
• Based on personality
• Based on peer popularity
• Emotional immaturity
• Pubs, clubs, drinking, smoking, fashion are
  pointless
• Cannot access social arenas
• Sexual learning difficult
• Vulnerable
• depression, anxiety, criminality, self harm,
  inappropriate sexual/social behaviour

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Adulthood

• Independence
• Decision-making
• Coping with daily life
• Relationships
• University
• Employment
• Low anxiety
• These things may be neither possible nor
  desirable to some people with ASC.

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Steven

• Asperger syndrome, 27 years old
• Mainstream education
• Went to university
• Lived independently
• Could not cope
• Had mental breakdown
• Now diagnosed with schizophrenia with psychosis
• Lives in residential unit
• Poor self-care regularly sectioned to manage
  care
• Little speech, no engagement with activities or
  staff
• Sits and stares into space most of the day

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Friendships/Relationships - What are they for?

• May be lack of understanding of concept of
  friendship
• Social skills training may make assumptions about
  comprehension of fundamental concept
• Some people see people only in functional terms
• Friends/partners
• What are they for?
• What are the rules?
• How do I get one?
• What is a friend?
• Whats in it for me?
• Is it worth the hassle?

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Teaching Social Relationship Skills

• Act as social interpreter/translator - crucial
• Why do you want friends/relationship?
• What are benefits/disadvantages?
• Explain consequences
• Maintenance
• Doing things you dont want to do
• Tolerating company
• Sharing
• Supporting practical and emotional needs of
  others
• Tolerating opinions of others

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Why do you work?

• Money
• Social status (nice house, nice clothes)
• Social acceptance (employed)
• Get bored without something to do
• Fulfilment/challenge
• Social interaction
• To save money for the future
• The benefits make any stress worthwhile
• Going to work is worth it for most people
• This may not be the case for some people with AS

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Choosing a Job the bigger pcture

• Location where are the jobs I want?
• Transport how will I get there? Will I have to
  travel during rush hour (busy)
• Qualifications required
• Actual tasks of job
• Work environment Open plan, noisy, lighting,
• Social environment Chatty, social, team-work
• Culture and management style large/small
  organisation, corporate, technical, educational,
  rigid, self-motivation
• Hours include travel time
• Other factors of particular importance

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Perfect Jobs

• Involve topic of interest (trains, museum,
  library)
• Solution focused (developing new software or
  system)
• Solo working (postman, gardener) not team
  player
• Clear start and end point to task (accountant,
  cleaner)
• Detail focused (proofreading)
• Accuracy (quality control, data entry)
• Manage own time/self-employment
• Allow to do things own way
• Technical/practical
• Specialist niche
• Manageable work environment

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Successful Support

• Works with the autism not against it
• Does not try to normalise
• Accepts the reality of the individual as valid
• Is designed around the individual rather than
  generic
• Does not judge

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Karen

• Classic Autism, 35 years old
• Lives in supported accommodation
• Visiting support workers every day
• Lives alone
• Manages shopping, cooking and daily tasks with
  support
• Attends life skills course at college
• Volunteers in charity shop
• Attends weekly social group for people with LD
• Goes on holiday with group
• Regular visits and outings with family who live
  nearby

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Role of Parents/Carers

• Advocates
• Autism Experts
• Need to understand the system
• May need to fight for support/provision
• Challenge the system
• Pick up the pieces
• Deal with own emotional needs

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David

• High Functioning Autism, 28 years old
• Extremely high academic intelligence
• Was independent, capable and able to go out alone
• Went to residential unit was subject to poor
  staff care
• Returned home.
• For the past 2 years, he has not left the house
• Has not had haircut, hygiene is very poor
• Rarely leaves his room
• Will not meet any new people including support
  staff
• Support funding in place, but D cannot acces it
• Family are overwhelmed and sole carers

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Assessing Potential Services

• Staff training and knowledge of ASC
• How much training?
• Where from?
• Test their knowledge
• Environment
• How many people?
• Decor/furnishings?
• Location

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Assessing Potential Services

• Who are the other residents/service users?
• What are their needs?
• Is this a good match for someone who finds people
  difficult and may struggle with negotiation,
  sharing and empathy?
• Who are the rules for?
• Staff or residents?
• Challenging Behaviour
• If a service/school cannot cope with behaviour,
  look at the service not the person.
• The service/school may be causing the behaviour.

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Presenting Information

• Person may ask a lot of questions
• This means they dont understand
• Very detailed information
• Person may not make assumptions or guess what you
  require
• Clear and concise
• Dont use any more words than required
• Back-up verbal instructions with written notes
• Short-term memory often poor
• Provide the context and bigger picture
• this is why I am asking you to do this task and
  this is how it fits into the project/day as a
  whole

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Practical Strategies

• Information What is going to happen next?
• Make the world a safer place (predictable)
• Emphasise benefit to person (whats in it for
  me?)
• No surprises
• Schedules
• Images/pictures/symbols
• Reminders/alarms
• Prior warning

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Success Factors

• Provide an autism-friendly environment
• Allow opportunities for success
• Focus on strengths
• Give role self esteem from being useful
• Give concrete praise, rather than abstract
• Provide the bigger picture (why does person need
  to do this?
• Model, explain and teach social behaviour
• Appreciate that person is doing their best all of
  the time