Why nidotherapy is worth considering for autistic spectrum

disorder and intellectual disability ?

Peter Tyrer, Imperial College

Definition

• Nidotherapy is:-

• ‘the collaborative systematic assessment and modification of the environment to minimise the impact of any form of mental disorder on the individual or on society’ (Tyrer, Sensky and Mitchard, 2003; Psychotherapy and Psychosomatics, , 72, 350-356)

10 principles of nidotherapy •

1. All people have the capacity to improve their lives when placed in the right environment 2. Everyone should have the chance to test themselves in environments of their own choosing 3. When people become distressed without apparent reason the cause can often be found in the immediate environment 4. A person's environment includes not only place but also other people and self 5. Seeing the world through another's eyes gives a better perspective than your eyes alone 6. What someone else thinks is the best environment for a person isn't necessarily so 7. All people, no matter how handicapped, have strengths that can be fostered 8. A person’s environment should never be regarded as impossible to change

• 9. Every environmental change involves some risk but this is not a reason to avoid it 10. Mutual collaboration is required to change environments for the better

Copyright ©2000 BMJ Publishing Group Ltd.

Campbell, M. et al. BMJ 2000;321:694-696

Framework for evaluation of complex interventions

Phase 0 constitutes the principles of nidotherapy, we have some way to go before the end

Phase 1 – the components of nidotherapy

• Selection of patients

• Form of treatment (individual, group, staff)

• Components of treatment Environmental analysis Creating a nidopathway Setting timetables Monitoring and modifying the nidopathway

• Selection of therapists (usually a secondary issue)

Selection of patients

• Nidotherapy is not a treatment of the person; it is a treatment of the environment. So the first task in nidotherapy is to judge whether it is the patient or the environment that needs to be the main priority

What factors come into the choice of nidotherapy?

• Has the patient got treatable pathology?

• Have all evidence-based treatments been given appropriately and for the right length of time?

• Is the patient keen to have further therapy?

• Could environmental factors be a significant part of the problem?

Our provisional ordering of diagnostic suitability for nidotherapy

Intellectual disability Autistic spectrum disorder Personality disorder Dementia Depression (chronic) Cocaine dependence Alcohol dependence Schizophrenia Attention deficit hyperactivity disorder Obsessive compulsive disorder Phobias Post-traumatic stress disorder Anorexia nervosa Panic disorder Bipolar disorder

Environmental analysis

• The aim is to look at every single part of the environment in all its forms

• This involves both therapist and patient in equal measure

• It examines the physical, social and personal environment

General approach to environmental analysis

These underline the attempt to make environmental change as systematic as possible:

1. No pressure to change the person (to treat the untreatable)

2. It changes the environment, not the person

3. It involves genuine partnership and involves the messenger as much as the message

4. It comprises environmental judgement and advocacy

5. It dissolves boundaries between people

True acceptance

• We do not normally ‘get inside the head’ of patients to find out what they really want in life. In nidotherapy we do this by (i) seeing people in their own environments, not artificial ones that suit the therapist only, (ii) liking them for what they are, not what you would want them to be, (iii) harnessing your own skills as a therapist to help to articulate those who are often inarticulate.

Environmental change only

• Nidotherapy is not a treatment of the person; it is a treatment (or manipulation) of the environment for the person

• We have failed to understand that managing the environment only is just as much a harbinger of change as treating a symptom

• By focusing on the environment only it is possible to effect change by the back door carried out under the control of the patient, decided by the patient, not the therapist

Genuine partnership

• By getting a good understanding of what patients want and need you are able to work out with them what environmental changes are needed

• This involves environment in all its forms

• It may even extend to the taking of medication (as this can influence the personal and social environment markedly)

Environmental advocacy

• People often want changes in their environment but are unable to achieve them for a number of reasons

• The nidotherapist as environmental advocate can make these changes happen by harnessing their skills to the patient’s ones

• Persuasion of others may also be necessary and so then more advocacy is needed

Dissolution of boundaries

• The nidotherapist, whilst maintaining a professional relationship with the patient, often has to prevent the normal distance between patient and therapist from developing as this can be unhelpful

• Just as we may call on a friend to help us with a sticky problem the patient needs to be able to do the same with an environmental one

• But the nidotherapist becomes an environmental aide, not a personal guru

Where do other treatments overlap?

• Dynamic psychotherapy – hardly at all

• Cognitive behaviour therapy – a little

• Problem-solving – sometimes

• Behavioural analysis and therapy – sometimes

• Social skills training – a little

• Person centred planning - a little

• But none of these are environmental treatments – they are essentially aimed at the person

Does it work?

• Yes, for people whom have failed with every other treatment

• For example, take the combination of chronic psychotic and personality disorder

• This analysis (a randomised trial of nidotherapy + assertive outreach therapy versus assertive outreach alone in severe mental illness and personality disorder) is clearly not related to autism but both groups are very treatment resistant

Mean change in bed usage at baseline and one year after randomisation

Vertical bars denote 0.95 confidence intervals

control (n=21)

nidotherapy (n=26) baseline one year

0

20

40

60

80

100

Results of main trial of all patients (52 randomised)

P=0.07

And this has cost implications

Nidotherapy group

(n=19)

Control group

(n=15)

Mean SD Mean SD

Mean

difference (95% CI) p-value

Inpatient stays (nights) 54 75 139 135 -85

Health care (£) 15,173 15,786 31,105 27,290 -15,932

Hospital costs (£) 10,938 14,990 27,871 26,986 -16,932

Community health

services (£) 3,159 1,628 2,065 1,256 1,094

Medication (£) 1,076 1,704 1,170 875 -94

Social and voluntary services (£) 3,559 5,622 2,561 4,466 998

Community (£) 1,101 1,288 717 682 383

Accommodation (£) 2,458 5,628 1,844 4,618 615

Criminal Justice (£) 181 787 2 7 179

Total costs (£) 18,963 19,010 33,668 27,022 -14,705

(-30,791 to

1,380) 0.072

Inpatient stays and total cost of services used over 12 months follow-up

Why nidotherapy for intellectual developmental disorder and autism?

• Because these conditons are egosyntonic and need adaptation, not change

• In such circumstances it is wise to attempt to alter the circumstances to try and minimise the problems it creates for the outside world as well as for the individual, rather than change the person.

How nidotherapy might prevent aggressive challenging behaviour

• In people with intellectual disability this behaviour has lots of causes – frustration, depression, need for attention, inability to express a range of needs in any other way, personality problems, basic physiological needs (eating, drinking , sex)

• Nidotherapy helps to identify these and provide solutions

NIDABID project (Nidotherapy for aggressive behaviour in intellectual

disability)

• Cluster randomised controlled trial

• Participants: 20 care homes for people with ID (totalling 120 residents)

• Treatments: (i) Enhanced care programme approach, (ii) nidotherapy

Procedure

• Randomisation of care homes by independent statistician (Dr Obi Ukoumunne, Peninsula Medical School, Exeter)

• 4 visits by either (i) CPA trainer (Group 1), (ii) nidotherapist (Group 2) over course of 4-6 months with purpose of training staff

• Independent blind assessments of each resident at monthly intervals at each care home over 9 months

Study timetable

• December 2010 – randomisation

• December 2010 – June 2011 (training of staff in the two treatment approaches)

• Follow-up of residents at monthly intervals (November 2010 – February 2012)

• Assessments of violent episodes (Quantification of Violence Scale), Modified Overt Aggession Scale (MOAS), new Problem Behaviour Check-List (27 items), costs of care

Behaviour absent Minor and often

frequent behaviour

but little disruption to

others

Moderate problem

behaviour creating

distress and disruption

Serious problem

behaviour leading to major

concerns and risk to others

Extreme behaviour leading to

threat of loss of life or

permanent injury and damage

0 1 2 3 4

Personal Violence

Score (0-4):

No verbal abuse and no

form of violent

behaviour

Verbal abuse Threatened violence or

minor assault with no

lasting injury or breaking

of skin

(e.g. slapping, pushing)

Physical assault with likelihood

of, or consequent, injury with

temporary handicap or

psychological damage (e.g.

bruising, fear avoidance)

Physical assault with permanent

or life-threatening injury (e.g.

poking through eyes, stabbing,

loss of consciousness)

Property Violence

Score (0-4):

No damage Minor damage with no

serious consequences

(e.g. tearing paper)

Moderate damage with

need for minor repairs

(e.g. breaking front

window)

Serious damage requiring major

property repairs or creating

some risk to others

Very serious damage with

threat to life or limb (e.g. arson,

floor

collapse)

Self-Harm

Score (0-4):

No self-harm Minor harm with no

breaking of skin (e.g.

minor head banging)

Moderate self-harm with

breaking of skin,

scarring or small

overdose but no long

term

Serious self-Harm with potential

of risk of death

(e.g. swallowing bleach, poking

own eyes)

Suicidal act or violent self-harm

leading to death or permanent

handicap

Problem Behaviour Check List Patient Code/Identifier: ________________ Date: _________________ Assessor: ______________

Initial results

• Preliminary findings shows differences between the two treatment methods

Analysis of quantification of violence scores in nidotherapy and care

programme groups

F(9, 189) =3.55, p=.00043

Vertical bars denote 0.95 confidence intervals

nidotherapy (n=10)

CPA (n=10)

baselinemonth 1

month 2month 3

month 4month 5

month 6month 7

month 8month 9

TIME

-10

-5

0

5

10

15

20

25

30

35

40

Me

an

QO

V s

core

s

Preliminary analysis of data from NIDABID study (scores for each care home summed)

Problems in project • Some care homes very good at understanding the

principles of nidotherapy and already implementing the principles, but others disinterested and difficult to motivate

• Often a negative therapeutic attitude along the lines of ‘nothing for these people will ever change’

• Decision made to show the residents’ potential by making a film of a play

New developments

• Nidotherapy for autistic spectrum disorders is going down very well in Sweden:

Nidohandledarutbildning - course program (11th-13th June, 2012, Stockholm) And my colleagues there have asked me to pomote their book:

The ultimate guide for care givers - Adults with Autism Spectrum Disorders By Anna Sjölund & Susanne Bejerot Illustrations: Ossian Humble Translated from the original Swedish by Amanda Hicks

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