Autism, Competence, Asperger Syndrome and Capacity Dr. Steve Hinder 14th October, 2013, Kegworth
Introduction • Aim to share clinical experience • Challenge some assumptions • I may be politically incorrect (apologies if I cause offence) • This is a personal view (very little evidence base) • You may not agree with me, and I welcome discussion • I will argue that at the extremes of the ASD spectrum, we tend to underestimate “competence” or overestimate “capacity”
Underestimating Competence …………….Let me tell you about Joe • • • •
Never had any (overtly) meaningful speech Very noisy, hums, murmurs Aggressive behaviour in the past Family state that Joe can follow complex instructions when relaxed • Recent decline in mobility/skills with catatonic features – posturing and grimacing • Medication unhelpful, neurologist has recommended ECT • Has an intelligent demeanour (personal opinion)
Severe LD or Severe autism? Severe LD Severe autism
Why is the severity of the autism never assessed or described?
Does non-verbal = severe LD? • NO!...............note Selective Mutism • Numerous descriptions in first person accounts of sudden speech in autism • I didn’t believe it until I heard it • What is the mechanism behind this? • I believe severe anxiety
My View of Autism Triad
I believe that the triad of Impairments is at least partly a response to anxiety, not the cause of it. (Though it works both ways)
Disordered Sensory & motor Differences Sense of Self
Core cognitive and Emotional deficits Monotropism
Disordered Arousal regulation
How does severe anxiety affect competence? Fight or Flight response?
No…………..fight, flight or FREEZE
One form of Freezing…… Catatonia Many psychiatrists have never seen catatonia…………
Catatonia (1) • Increasingly recognised • Qualitatively different to that seen in SZ or MDP (may not get catalepsy or stupor) • May be more treatment resistant (my observation) • Essential features...... 1. Increased slowness affecting movement and verbal responses 2. Difficulty in initiating and completing actions 3. Increased reliance on physical and verbal prompting 4. Increased passivity and apparent lack of motivation
Catatonia (2) • Other features.......... 1. Reversal of day and night 2. Parkinsonian features (tremor, eye-rolling, dystonia, freezing, stiff posture, hesitation at thresholds) 3. Paradoxical excitement and agitation 4. Increase in repetitive, ritualistic behaviour • Can be dramatic response to Lorazepam and ECT • Poorly understood overlap with neuroleptic malignant syndrome
An example of a more subtle presentation of catatonia………. A 23-year old man previously diagnosed with autism presented with progressive catatonia over the last 4 years since leaving a special school for autistic children and becoming increasingly socially isolated while staying at home. He used to be fully independent in all aspects of self-care, but had become totally dependent on his mother. The morning routine of getting up, washing and dressing was taking up to five hours. He frequently became „frozen‟ and each small meal was lasting for hours. He was severely underweight and still losing more weight. He hardly talked at all. When asked questions, he took a long time to respond and even then was able to answer only in monosyllables. He whispered the answers very softly. He seemed unable to lift his head to make eye contact or to interact. He had a fixed expression on his face and was not able to acknowledge people in any way. He was spending most of his waking time on a sofa in the living room, in a fixed stooped posture with his head bowed and his arms hanging by his sides. He tried to respond to instructions but each movement seemed agonizingly difficult. Before each action, his body twitched and jerked, he blinked continuously and made repetitive movements with his mouth.
Another theory……Movement difficulties are the primary deficit in autism (Donnellan & Leary) • Based on the book “Movement differences and diversity in mental retardation” – big influence on me • Can be problems with starting, stopping, combining, executing, continuing + switching • Movement disturbance may then affect speech, thoughts, perceptions, memories, emotions • Profoundly affects early experiences • May impair learning about self; learning about textures, tastes, temperatures; learning about size; learning about orientation of body in space; development of perceptual skills and independence from others
Examples of movement disturbance in autism Repetitive movements Grimacing
lack of inhibition hand flapping Poor coordination
problems with initiation/stopping spinning
abnormal startle response
Problems with speech volume/rhythm slow speech
Implications • • • •
• • • •
People cannot demonstrate their competence ALL COMMUNICATION REQUIRES MOVEMENT Do aloof children have extreme delay in motor response ? AUTISM IS THE WAY PEOPLE ARE, RATHER THAN A THING PEOPLE HAVE Emotions, thoughts and memories may require “movement” on a smaller, neurological level Slow information processing We all need prompts, until a sequence of actions becomes automatic Eg. Learning to drive Accomodations better than prompts
Accomodations • Contrived strategies, may include gesture, touch, rhythm, visualisation, music, specific carer • Different for every person • Help find balance between activation/inhibition • Clients may have developed already, but been labelled as selfstimulatory, obsessional, perseverative • Changes in staff can be devastating • We all use accomodations • Implications for revisiting facilitated communication • Fits well with intensive interaction techniques
Thoughts of Ralph Maurer……….
“According to Dr. Maurer, the ongoing problem for people with autism is one of synchronizing emotion with a partner, of making connections in ways that allow emotions to be recognized and cultivated by others. Autism can be thought of as an "emotional dyskinesia" because the physiological channels through which non-intimate relationships are usually organized, vision and hearing, are impaired or closed. However, Maurer emphasizes that the capacity for relationship remains present. Facilitated Communication may succeed because it connects through an open channel involving movement or touch. However, since it is based on the forging of a relationship -- i.e. a complex synchronization of interactions -- it doesn't work for every would-be facilitator. Maurer has characterized a good facilitator as akin to a dance instructor: someone who can take a novice with two left feet and waltz them around the room. A crucial but overlooked obstacle to this "dance of relationships" is that, in people with autism, the pulse of interactions tends to be slowed down. The time frames and units in which we tend to organize and recognize interactions may not apply to the behavior of people with autism: we may miss the actual shape and size of their behaviors because they are occurring on much longer wave-lengths which do not synchronize with our own. Slowing down the interaction pulse may help us to recognize and respond to pattern in what had previously appeared random, and of such synchronies relationships and communication are made”.
And now for something completely different…… Three clients who worry me………………
“V” • Woman in her 30’s, diagnosed with mild/moderate LD • Several hospital admissions with psychosis, often triggered by pregnancy or other stress. Most recently very paranoid and catatonic, treated with ECT • Has had 4 children, all taken into care • Currently in residential care, 24 hour staffing, constant supervision. Mental illness seems completely resolved with Olanzepine. • Social worker wants to move her into supported living • As I have got to know her, I increasingly feel she is autistic • No empathy, no common sense, no social boundaries, denies she has any LD, wants to have another baby and has a plan for how she will keep it • Babies may be her special interest
“F” • • • • •
Man in his 40’s, diagnosed with mild LD, lives with family Referred to me as family were concerned for his safety Victim of mortgage fraud – signed his house over to conmen in 2008 Police took no action as he did this willingly More recently, gave a lot money to a man who told him he would get him a wife from Pakistan. Again, no action. • I feel he is autistic, excellent verbal skills, very plausible, almost certainly not learning disabled • Family get several letters each week showing that he spends his days visiting estate agents, solicitors offices, loan companies etc, making naïve enquiries about setting up his own business • Social services cannot (or will not) safeguard him
“A” • • • • • • • • • •
22 year old woman, diagnosed with mild LD and ADHD Pregnant last year, started to self-injure and make suicide threats I saw her and felt no mental illness, but may be autistic Extraordinary lack of social boundaries/understanding I gave evidence to Court of Protection re lack of capacity to consent to a Caesarian section which had been recommended Baby now in care, “A” in residential group home Has published graphic pictures of herself on facebook Marked sexual disinhibition Subject to DOLS, but assessors do not wish to extend, recommending guardianship, and a move to supported living I now feel she is extremely autistic
What do my clients have in common? (1)
• I feel they lack capacity to make important decisions (This is the controversial bit) • Extremely vulnerable to financial and sexual exploitation • Profound lack of empathy and social understanding • Disturbed sense of self and highly unrealistic expectations • Totally egocentric, focused on the self • Very plausible – say the right things to social workers • If this is Asperger syndrome, certainly is not a “milder” form of autism – they have a SEVERE social communication problem
What do my clients have in common? (2) • Labelled as LD but this may not be the case (IQ testing would not be reliable) • Cannot lie so constantly give themselves away • No concept of danger at all • Completely lacking any INSIGHT, deny any disability, so incredulous as to why freedom might be restricted • Difficult to elicit difficulties in third area of the triad (especially in women) • But, this combination of problems seems more common in women
Aspergers/Autism in Females (1) • • • •
Diagnosis very easily missed Diagnosis often made much later than for boys More even profile of social skills Learn better through imitation, better at copying, so learn how to “fake it” and get by socially • Special interests often less bizarre or unusual, but girls immerse themselves in them • May escape into fiction, animals, fantasy world, and have imaginary friend as child • Can be intense interest in soaps, celebrities, other people’s lives
Aspergers/Autism in Females (2) • Less disruptive or aggressive than boys • May have a single intense friendship • Can appear tomboyish, no concern with fashion or appearance • Poor sense of identity, chameleon-like but can “camouflage” difficulties • May seem immature rather than odd • May be Δ as OCD, anorexia, depression • Preoccupation with food in anorexia?
Observations and Dilemmas (1) • My views on capacity are out of step with colleagues • But I am not alone…….see Lepping, British Journal of Psychiatry 2011, “Overestimating patients‟ capacity”
• Lack of insight is striking – but does this equate with lack of capacity?.......MCA code of practice says no, but only gives example of person with dementia refusing a care home • I can only find one article on insight in Asperger syndrome, not terribly helpful……..Didehbani et al, Journal of autism and developmental disorders, 2012
• Lack of capacity is accepted in some of these clients, and a DOLS is in place, but assessors refuse to extend
Observations and Dilemmas (2) • No one is comfortable with committing to the possible need for lifelong safeguarding • Social workers in Birmingham are steering people towards MHA Guardianship, but can the clients “respect the authority of the guardian”, and is this the least restrictive option? • Commissioners are increasingly making or forcing decisions inappropriately, without proper clinical consultation • Don’t get me started on tenancy agreements
Philosophical and Political debate Dynamic tension in services • • • • • • • • •
Normalisation vs Specialisation Inclusion vs Special schooling Supported living vs Residential care Broadening horizons vs Allowing for disability Advocacy-based vs Paternalistic Innovation and risk-taking vs Protection Empowering vs restrictive Politically correct vs Politically incorrect Capacity vs Lacking capacity
• Good vs bad ??
Take home messages • Consider whether a person labelled as having SLD may be autistic, and unable to demonstrate their true competence. Give them your time and respect. Consider the possibility of catatonic features. • Are you missing autism or Asperger syndrome in your female clients? • Contribute to the capacity debate!
• Thank you for your attention