NDDs Intervention, Support and Context

Question 1

Potential therapies for NDDs

Answer 1

Zinc

Music therapies

Diet

Art therapy

Sensory integration therapy

Homeopath

Holding therapy
- Weighted blanket

Question 2

PECS

Answer 2

Picture Exchange Communication System

A unique augmentative/alternative communication information package for individuals with ASD and related DDs

Pictures used for children to communicate with a parent/educator

• I want
• I see
• Thank you

Question 3

PECS phase 1

Answer 3

How to communicated

Students learn to exchange single pictures for items or activities they really want

Question 4

PECS phase 2

Answer 4

Distance and persistence

Still using single pictures, students learn to generalise this new skill by using it in different places, with different people and across distances

Also taught to be more persistent communicators

Question 5

PECS phase 3

Answer 5

Picture discrimination

Students learn to select from two or more pictures to ask for their favourite things

These are placed in a communication book

Question 6

What is a communication book?

Answer 6

A ring binder with Velcro straps where pictures are stored and easily removed for communication

Question 7

PECS phase 4

Answer 7

Sentence structure

Students learn to construct simple sentences on a detachable sentence strip using an ‘I want’ picture followed by a picture of the item being requested

Attributes and language expansion

Students learn to expand their sentences by adding adjective, verbs and prepositions

Question 8

PECS phase 5

Answer 8

Answering questions

Students learn to use PECS to answer the question ‘what do you want?’

Question 9

PECS phase 6

Answer 9

Commenting

Now students are taught to comment in response to questions such as ‘what do you see?’, ‘what do you hear?’, and ‘what is it?’

They learn to make up sentences starting with ‘I see’ ‘I hear’ ‘I feel’ ‘It is a’ etc.

Question 10

Applied Behavioural Analysis (Lovaas, 1987) recommendations

Answer 10

Start before age 3

At least 40 hours per week

Therapy should last at least 2 years

One-to-one discrete trials

Question 11

Early Start Denver Model

Answer 11

Dr Sally Rogers

Parents and therapists use play to build positive and fun relationships

Through play and joint activities, the child is encouraged to boost language, social and cognitive skills

Question 12

Issues with the Early Start Denver Model

Answer 12

Should we really be trying to train autism out of individuals?

Question 13

Pros of ABA

Answer 13

Parents can experience positive interactions with their child

Challenging behaviour can reduce

Can improve adaptive behaviour

Can facilitate communication

Question 14

Cons of ABA

Answer 14

Can be seen as training infants to be neurotypical when they aren’t

Can give parents false hop of a cure

Financial implications

Outcome may not necessarily be positive

Question 15

Makrygianni & Reed (2010)

Answer 15

Review of 14 studies on ABA

Behavioural programs are effective in improving several developmental aspects

Question 16

Makrygianni & Reed (2010) key predictors of improvement

Answer 16

Program intensity

Program duration

Parental training

Age at intake

Adaptive behaviour at intake

Question 17

Controversies around early intervention

Answer 17

What does effective mean?

• Higher IQ
• Less autistic behaviour
• More adaptive behaviour
• Long-term social outcomes

Question 18

Norbury & Sparks (2012)

Answer 18

It is important to consider what family members are worried about and what they value or disvalue about their child’s behaviour, language and education

Not up to the therapist or teacher to say what the child should/should not be doing

Question 19

Should there be family focussed research?

Answer 19

Cridland et al. (2014) found a bi-directional influence on family

Having a child with NDD in the family…

• Effects daily routines
• They may need support with self-care, mobility, communication etc.
• Increased experience of stress

Question 20

What could family focussed research inform?

Answer 20

Clinical support services

Facilitate coping and support mechanisms

Question 21

Should you consider family members separately?

Answer 21

Guite et al. (2004) found that mothers report more sibling adjustment problems compared to the siblings themselves

A mother might be worried about the effect on the other children, whereas the children may not perceive any problems

Question 22

Positive impact of autism on the family

Answer 22

Improved communication skills

Higher levels of empathy and patience

Increased compassion

Refocus of energy
- Tend not to worry about the little things anymore

Improved self-concept and self-confidence

Question 23

Family systems approach

Answer 23

Boundaries

Permeability

Boundary ambiguity

Resilience

Traumatic growth

Question 24

Boundaries

Answer 24

Hypothetical borders between and within a family system and its environment

The external boundary defines the family in relation to other systems

Internal boundaries determine who is included and excluded in the subsystems

Question 25

Permeability

Answer 25

Degree of difficulty or ease that information and system members have in crossing the boundaries

Open systems can be weak as boundaries are loosely defined, resulting in confusion about family roles, identities and goals

Closed systems can be rigid and restrict information permitted into the system, limiting physical, psychological and social growth

Question 26

Boundary ambiguity

Answer 26

Confusion about roles and responsibilities experienced by family members resulting from poorly regulated boundaries

Question 27

Resilience

Answer 27

Ability to cope with challenging life circumstances

Includes physical, psychological, emotion and social resilience

Question 28

Traumatic growth

Answer 28

An extension of resilience where coping involved positive change as a result of challenging life circumstances such as an increased appreciation of life, personal strength, family solidarity and quality of relationships

Question 29

Tint & Weiss (2015)

Answer 29

Systematic review

Family wellbeing is an important concept underlying public policy and clinical practice

Question 30

Tint & Weiss (2015) recommendations

Answer 30

Use a theoretical framework

• Socio-ecological model
• Individual
• Families
• Communities

Research can help identify appropriate resources

Don’t over rely on maternal self-report

Expand family wellbeing research beyond the autistic child’s early years

Question 31

How might having a family member with a NDD influence daily life?

Answer 31

Higher empathy and greater understanding of disabilities

Tasks may take longer

Impact on siblings

Improved communication skills

Increased planning and structure may be required

Question 32

Variability in context in understadning NDDs

Answer 32

Universality of deficit
- Does everyone experience the same thing?

Inter-individual variability
- Between individuals’ differences

Intra-individual variability
- Differences within the same individual (could be due to sleep, hormones, mood, environment)

Question 33

Sample size in context in understanding NDDs

Answer 33

Practical considerations
- Funding/resources

What effect size is expected?

Anticipated drop-out rate

Participant fatigue

What is the research question?

Question 34

Using standardised measures when looking at NDDs

Answer 34

Absolute/relative deficit

Are they appropriate for the population
- May performance be underestimated?

Question 35

What can studying NDDs tell us?

Answer 35

Better understanding of alternative ways of thinking

There is no single ‘correct’ way of thinking or being

Individual differences contribute to a rich a vibrant society

Acceptance of neurodiversity is vital

Question 36

Why use a developmental trajectory?

Answer 36

Goes beyond group comparison

Neuro-cognitive development is dynamic across the lifespan

There is no static end state

Consider recovery, plateau, decline