Headquarters Waverley Gate, 2-4 Waterloo Place, Edinburgh EH1 3EG Chair Brian Houston Chief Executive Tim Davison Lothian NHS Board is the common name of Lothian Health Board

Lothian NHS Board Waverley Gate 2-4 Waterloo Place Edinburgh EH1 3EG Telephone 0131 536 9000 Fax 0131 536 9088 www.nhslothian.scot.nhs.uk

Date 29/10/13 Our Ref 4127 Enquiries to Richard Mutch Extension 35687 Direct Line 0131 465 5687 Email richard.mutch@nhslothian.scot.nhs.uk

Dear FREEDOM OF INFORMATION – ASD I write in response to your request for information in relation to autism spectrum disorder (ASD) within the Scottish Prison Service. Question:- Please confirm that the complete presentation "Autism Matters" was provided. Answer:-

I have re-enclosed the complete presentation for your information as the final page you have described is not the final page contained in the pdf presentation we provided.

Question:- In Dr ~~~~~~ expert opinion, would AS (where it is present to the level that a secure clinical

diagnosis is given) amount to a disability as defined under section 6(1) of the equality act 2010. Whether it is likely that someone with AS being required to share a cell with another prisoner would cause them substantial mental health issues (eg stress/anxiety/depression/self-harm).

Answer:-

I must advise that the opinion of an individual is not covered under the Freedom of Information (Scotland) Act 2002, only recorded factual data. As per Section 17 of the Freedom of Information (Scotland) Act 2002 formally I must inform you that NHS Lothian do not hold this information.

I am sorry I cannot help further with your request. If you are unhappy with our response to your request, you do have the right to request us to review it. Your request should be made within 40 working days of receipt of this letter, and we will reply within 20 working days of receipt. If our decision is unchanged following a review and you remain dissatisfied with this, you then have the right to make a formal complaint to the Scottish Information Commissioner.

4127-asd personal opinion - october 2013

If you require a review of our decision to be carried out, please write to the FOI Reviewer at the address at the head of this letter. The review will be undertaken by a Reviewer who was not involved in the original decision-making process. Yours sincerely ALAN BOYTER Director of Human Resources and Organisational Development Cc: Chief Executive Enc.

Autism Matters

©Dr Jane Neil-MacLachlan

“Autism has become to disorders what Africa is to social issues” (James 2007)

Diagnosis of Autism applies to

A 5 year old who has no spoken language

A 20 year old computer science student

A 40 year old parent with no interest in social interaction

There is no typical Autism

4 views of Autism

Illness-Autism is seen as a brain disorder and the language of medicine applies

Identity- self advocates- see genetics as eugenics, causal explanations as irrelevant and treatment is coercive

Injury-eg vaccination-ASD caused by injury look for alternative treatments

Insight- social neuroscience-to gain insight into functioning even if no cause or cure found

Today we'll try to highlight aspects of all of these views as they are all of interest

In working with adults on the autism spectrum we need to be aware of these

It’s a complex condition

Views are changing all the time

The people remain the same!

DSM 5

This is the recently released diagnostic manual of the American Psychiatric Association

In this version Asperger Syndrome as a condition has been dropped

However, DSM5 has been widely criticised

In Europe ICD 10 continues to be used and Asperger Syndrome is recognised in it

Today we're talking about Asperger Syndrome

This is a neurodevelopmental condition on the Autism Spectrum

I'll talk generally about Autism then move on to Asperger syndrome in more detail

“Autism isn't something a person has, or a “shell” that the person is trapped inside. It is pervasive,it colours every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person”

“If you have a camel which is finding it hard to walk under the weight of a load of straw, the easiest way to make it easier for it to walk is to remove as many straws as possible and not to train it to walk or appear to walk whilst carrying the straws”

(Williams 1996)

To take the straws off the camels back you have to do two things………..

1)Identify them

2) Know how to remove them

How common is it?

Total prevalence 1+:100

Estimated ASD population in UK: 540,000

433,000 Adults

107,000 Children

(Knapp Romeo and Beecham 2007)

Adults on the Autism Spectrum

Epidemiology of Autism Spectrum Disorders in adults in the Community in England. (Traolach, Brugha et al 2011)

Conclusions: Conducting epidemiologic research on ASD in adults is feasible. The prevalence of ASD in this population is similar to that found in children. The lack of an association with age is consistent with there having been no increase in prevalence and with its causes being temporally constant. Adults with ASD living in the community are socially disadvantaged and tend to be unrecognized.

Kids

ADULTS

?

9342 <16ASD in Scotland1% of population

42,500>16

Sex Ratio

Used to be 10:1 Males/females

Then 6:1

Then 4:1

Now?

Maybe different presentation in females

Causes?

Probably genetic predisposition with environmental triggers

More environmental triggers now

New research is clarifying the genes involved

How is “Autism” caused?

The underlying neurological causes of problems related to social relationships, linguistic abilities and adaptation to change are under intense investigation.

Different approaches combining clinical assessment and biological studies suggest abnormalities in brain growth, neural patterning and connectivity.

Various possible candidate regions for autistic dysfunction have been located in the cerebellum, the temporal lobe, fusiform gyrus, amygdala, the frontal lobes and the white matter tracts of the corpus callosum.

However, no one area has been consistently implicated, and findings from neuroimaging studies have often failed to be replicated.

Research on neurotransmitters has focused mainly on serotonin and dopamine and more recently on the glutamatergic synapses.

Findings from both neuroimaging and neurochemistry are suggestive of early brain “network” dysfunction rather than of primary and localized abnormalities.

Dr Hans Asperger

History

1920s in Russia Ewa Sucharova wrote a paper on “schizoid psychopathy” (personality disorder) in children.

1944 in America Kanner described “early infantile autism”

1944 in Germany Asperger described “autistic psychopathy”

These all describe approximately the same constellation of symptoms/ personality traits now called Autism or Asperger`s syndrome.

Several early yet clear descriptions exist of AS e.g. “Blair of Borgue”

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SLD MLD AS / HFA

70 IQ

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The Triad

People with Autism exhibit, to a greater or lesser degree, a Triad of Impairment, which is the defining characteristic of autism.

(Dr Lorna Wing)

The Triad

• Communication: Language impairment across all modes of communication: speech, intonation, gesture, facial expression and other body language

• Socialisation: Difficulties with social relationships, poor social timing, lack of social empathy, rejection of normal body contact, inappropriate eye contact

• Imagination : Rigidity and inflexibility of thought process. Resistance to change, obsessional and ritualistic behaviour.

Communication

Language may be rather formal & overcorrect

There may be problems with misinterpretation of literal/implied meanings/dialectal features/changing speech modes

Verbose – problems with précis

Impaired gist comprehension may lead to tangential/off topic responses

Monologuing

Some Figures of speech

Hunky dory

Not quite “the thing”

Over the moon

Change your mind

The cat's mother

Feeling blue

Sick as a parrot

Hold your tongue

Button it

Find your feet

Having a ball

Rise above it

Grasping at straws

Under the counter

Getting “smashed”

Hurt feelings

Credit crunch

“Away with you”!

You “missed yourself”

This is me since yesterday

Problems keeping up with topic change/unexpected responses/interruptionsProblems with comprehension of non-verbal aspects of speech may manifest as differences in rate, pitch & volume.Speech may sound monotonous.Often the most striking aspect of speech is how it is used communicatively.

Social Interaction

Lack of understanding of unwritten rules of society relating to proximity, touch, social timing, appropriate topics, the need to change communicative style depending on environment etc.

Inability to interact with peers in a socially appropriate way.

Lack of desire to interact with peers.

This lack of social understanding may lead to the development of unusual or undesirable interactive strategies.

At best, apparent tactlessness!

The quality of the social interaction is, perhaps, the most striking aspect of ASD.

Social Interaction problem?

Model

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Communication Skills

LinguisticSkills

Receptive

ParalinguisticSkills

Non-Vocal Skills(eg facial

expression,gaze)

Interaction Skills

Expressive

Speech Skills

Vocal Skills

Prosodic Skills(Sound of speech)

Words are like tofu- they gain their flavour from the emotion they are cooked in

Imagination

Engrossing/circumscribed interests may dominate a person’s time. Topics can vary infinitely depending on the individual. The key feature is the intensity of the interest. The actual topics can change over time

Imagination

Routines can be very important and can have a stress relieving function.

Change can be very stressful for people with ASD.

People with ASD may not like “surprises”

A key aspect of this problem with imagination is inflexibility of thought

People may have very fixed ideas

However, as they are not constrained by neurotypical, social, ways of thinking they can “think out of the box”

Motivation

People with AS may appear to be difficult to motivate

This may result from problems with imagination/inflexibility of thought i.e. they only know what they know

They may fear change

They may be perfectly happy doing what they always do

They may find their specific interests far more relevant to them than anything else and dislike the interruption

They may not address problems apparent to NTs as they don’t perceive them as problems e.g. personal hygiene

There may be a delayed reaction to an event or a change

This may manifest apparently “out of the blue”

Sensory Hypersensitivities

Auditory

Visual

Tactile

Olfactory

Gustatory

Vestibular

Proprioceptive

Auditory Hypersensitivity

People may have HYPERACCUTE hearingPeople may be distressed by LOUD noises or HIGH FREQUENCY ones orREPETITIVE ones (e.g. hair dryers/lawn mowers/Hoovers)People may hear very small sounds far away.People may not know which sound to respond to, all have equal weight.People may be listening to sounds within their own bodies.

Be aware of background noises

Reduce sound reverberation where possible

Try to avoid shouting

Vision

People can have an extreme sensitivity to light.There may be specific visual problems with depth perceptionSpecific focus can be varied ie hyper/hypofocussedPeople can be very distracted by visual stimulation, they can’t “edit out” the less important items within their field of vision.People may have problems with light reflection and “shine”.

People may be distracted by patterns.

People may be more fascinated by objects or items in the environment than by other people or whatever it is that they are meant to be attending to.

Vision

Reduce light reflection and shine where possible (it can be confusing and distracting)Matt surfaces on walls can help.Turn off unnecessary lighting (especially fluorescent) use natural light where possible.Lamps, rather than overhead lighting suit some.Lower wattage bulbs can help to reduce light reflection and overload.

Visual

When addressing an individual keep movement to a minimum. Avoid unnecessary body language.

Reducing non-relevant sound or touch can help individuals to attend to and process visual information.

SMELL

This is a very powerful sense.

A lot of information is stored by means of smell.

Some people with ASD categorise people and events by smell.

Smell can trigger bad (or happy) memories.

Behaviours termed as “challenging” may be triggered by certain smells related to unfortunate life events.

Smell

Where possible avoid wearing strong perfumes, as this can be distracting. Or always wear the same.Be aware that background smells can be a distraction (e.g. tarmacking operations, newly cut grass etc)Remember that individuals may be attracted to smells that may not be obviously desirable!

Touch

People may be hypersensitive to touch.Light touch can be alerting or can have an irritating effect.Deep firm pressure can be relaxing and comfortingPeople may have great difficulty wearing certain types of clothes. The fabric may feel unacceptably rough. It may also feel too light or too heavy

TASTE

People may have specific sensitivities to taste.

They may prefer sweet to savoury & vice versa.

Some people may refuse foods for reasons not immediately apparent: e.g.

Will only eat hot/cold food

Will only eat food of a certain texture.

Some people will choose food by colour or other visual preference.

Some people with ASD complain about certain foods based on how they sound in their heads while crunching or chewing.

Pain

People with ASD can have a very high pain threshold.This pain tolerance can fluctuate along with anxiety levels.If the patient feels that they know what’s going on & trust the staff they can cope with the pain.

If they become anxious they can experience the pain suddenly at an acute level & can experience shock & collapse.

Coping levels of pain vary over time so always ask. Don’t assume a patient experiences pain at the same level all the time.

Executive Functioning Deficits

Problems with organisation affects:Planning: organising activities to achieve a goalMental flexibility: completing one task and shifting attention to anotherInhibition: suppressing inappropriate responsesGenerativity: generating new activities and ideas

“……..I am autistic with above average IQ and have very low functioning eg I have 9 “O” levels but cannot make myself a sandwich”

Sleep problems

Circadian Rhythm Disturbance can lead to:

sleep wake cycles being disturbed

gradually sleeping at later and later times finally asleep all day and awake at night

Melatonin helps-tablets or patches

Lot of research currently ongoing

Mental Health

AS can exist co-morbidly with any mental illness

Anxiety very prominent

Depression

Psychotic episodes in early adulthood

Schizophrenia

Various studies show a link to AS

Various studies show no link with AS!

Type of language used by a person with AS can lead to misinterpretation e.g. “I`m an alien”

Literal thinking can lead to literal responses e.g. “Do you hear voices?” “Yes”

Other

AS co exists with a wide range of other conditions

ADHD

Dyspraxia

Dyslexia

DAMP

Joint hypermobility

etc etc etc…………….

Social Isolation

May be of long standing

May never have had a peer group

May never have learned a social perspective on life

Never had anyone to discuss their ideas with

May think everyone else's life is perfect

How can you help?

Structure

Positive approach

Empathy

Low arousal

Links

Environment

“My ideal environment is one where the room had very little echo or reflective light, where the lighting was soft and glowing and upward projecting.It would be a place where the educators voice was soft, so that you had to choose to tune in rather than be bombarded”

“It would be an environment that took account of mono and sensory hypersensitivity and information overload and didn’t assume that the educators perceptual, sensory, cognitive, emotional or social reality was the only one…………”

“There are many things that people with ASD often seek to avoid: external control, disorder, chaos,noise, bright light, touch, involvement, being affected emotionally, being looked at or made to look. Unfortunately most care environments are all about the very things that are the strongest sources of aversion”

People as environment

How should you be when working with adults with ASD?

Quiet

Calm

Confident

Kind

Last thoughts from an “Aspie”

You acquire 'templates' of how best to act based on the last best way you dealt with a similar scenario. And so, many mistakes I might have made when I was in my early 20's that would fit asperger's, I do not make any longer because I've learned to adapt. There may still be examples even now but I cannot see them perhaps because I haven't become aware of them yet. They do say you learn something new every day and I am certainly one to agree with that one! Life has been much more of a learning curve for me than many of my peers who just seemed 'to know' how to act and how to do things. I always felt I was behind my peers in development when it came to things like socialising. Now it all kind of makes sense I guess.

Summary and Key Points

People with ASD are not like NTsWhat may be priorities for us may be completely irrelevantTrying to force socialisation wont workEach person on the Spectrum is differentOne size does not fit allYou need to look carefully at all aspects of a person and their environment