“Early Bird” and “Early Bird-Plus” Parent Support Programmes by Mike Connor

“Early Bird” and “Early Bird-Plus” Parent Support Programmes

Follow-Up Survey of Parental Experience and Opinion

The Surrey LEA began to offer parents of pre-school children with autism the opportunity to join Early Bird Programmes in 2001.

Early Bird Plus, offering a modified version of the original programme for parents of children between the ages of 4 and 7+ years, became available later

This survey set out to gain an insight into the opinions of a sample of parents in Surrey who have completed either programme, to highlight the perceived long-term benefits of the programme(s) and other support that has been seen as most helpful, while also gaining an indication of the needs which are perceived as not being met by existing support provision.

M.J.Connor March 2008

Introduction

The National Autistic Society describes the Early Bird programme as a combination of group training sessions for parents of preschool children with autism and individual home visits where observations of the child and video-feedback are used to assist the parents to apply the strategies that have been recommended.

The programme covers a three-month period and the parents have a weekly commitment of training session (2·5 hours) or a home visit, plus ongoing work with their child.

The aims of the Early Bird programme are to provide support for the parents between the diagnosis of autism and admission to a school setting; to help parents to foster their child’s social communication and appropriate behaviour in the day to day environment; and to support parents in establishing good practice in the handling of their child in order to avert the development of maladaptive behaviours.

The three basic themes in the programme include helping parents to understand the nature of autism and how it is manifested in their child, to structure interactions in such a way as to allow communications to develop, and to manage or pre-empt behavioural problems.

Strategies include the NAS SPELL approach, elements of TEACCH, and PECS.

The Early Bird-Plus programme was designed to assist parents whose children have been diagnosed with autism at a later stage (at age 4 years or above) and are attending an Early Years or Key Stage 1 setting.

The programme seeks to support the management of the child both at home and at school via training provided to the parents/carers plus a professional who is regularly involved in working with the child.

The basic Early Bird framework is followed, with a focus upon the means of developing communication and managing behaviour. There are eight group sessions and two home visits by which to help parents to tailor the strategies to the particular needs of their child, and to foster consistency of handling by training the parents and professionals together using a mix of established practices

This programme does not set out to replace traditional early years work but is available as a means of further support for the parents of children between 4 and 8 years of age who would not have had access to the “younger-level” Early Bird programme.

Pilot programmes in various areas of the country were subject to an initial evaluation during 2001-2002, and evidence was found for significantly reduced stress on the part of the parents together with modifications in the communication style used with the children.

The participating parents were found to have developed more positive perceptions of their children; and the benefits remained largely present at a 6-month follow-up.

One of these initial programmes and evaluations was completed in Surrey, and existing reports by the present writer describe ...

Initial parental feelings and perspectives after the Early Bird course, as gathered by the use of standard assessment and rating instruments and by recording parental comments (August 2001).
The parental feelings and perspectives at 6-month follow up, where the same assessment tools were used and further comments and opinions recorded

(February 2002).

An overall summary of these initial provisions and outcomes (March 2002).

This local part of the overall evaluation exercise shared the generally positive outcomes in that, for example, the level of stress reported by parents in the sample showed a significant reduction from pre-intervention to post-intervention; and significantly positive changes were observed in the two sets of ratings of communication and socialisation in the children (albeit not in daily living or motor skills) as observed on the Vineland Scales of Adapative Behaviour.

This pattern was reinforced by the findings on the Childhood Autism Rating Scales which showed that 11 of the 12 children were rated as showing less severe symptoms following the Early Bird course.

There were some concerns expressed by parents, but largely about the practical organisation of the course rather than about content or outcomes ... such as the need for more time for sharing and discussing ideas, and the desirability of more specific parental grouping to match the level of need among the children and to ensure a shared meaningfulness of the issues and discussions.

There was also a need for some caution in interpreting the findings since all the children in the original group were involved not only in Early Bird but also in various pre-school settings allowing access to additional and specialist support, and most had access (as did their parents) to sessions with speech and language therapists, clinical psychologists, and paediatricians who would have been a further source of advice.

In other words, there could be some debate over the precise source of the gains reported in the children and in the family functioning; but the overall outcomes cited by the NAS on the basis of their wider sample suggested that Early Bird did bring about significant benefits.

The local follow-up after 6 months continued to produce results in terms of parental opinions and perceptions to indicate marked changes for the better when current performance was judged against the situation that pertained at baseline.

Nevertheless, it was suggested on the basis of the admittedly small sample that longer term support is desirable or necessary. Very high regard was afforded to the Early Bird programme, but the question was raised about what would be available subsequently.

It has been recognised that a critical need for parents/carers is for access to advice and support as soon as possible after the diagnosis of autism has been confirmed in their children. However, it appeared that there was a perceived absence of continuing advice and practical help for the families following the completion of Early Bird during the period of waiting for a nursery (or school) place, and during the initial stages at least of such attendance, when the families may still feel vulnerable and when the consistency of management of the children is important.

The hope was expressed that the experience of Early Bird would assist parents to identify further sources of support and advice, as well as forming the basis of an ongoing informal network for the parents.

Early Bird Survey 2008

The purpose of the current evaluative survey was to assess whether families are still using the strategies acquired via the Early Bird or Early Bird-Plus programmes; and to gain their views on what has been most helpful in respect of other forms of support (and where there are still seen to be gaps in provision to meet the existing needs).

Information was also sought about the school places currently attended by the children.

Questionnaires were sent to all the parents who have attended a programme since 2001.

42 completed questionnaires were returned by parents who have attended Early Bird programmes, and 28 by parents who have attended Early Bird-Plus programmes (but it is not known what proportion this is of all the parents concerned.)

Responses were tabulated and collated, and trends highlighted for the two programmes.

Early Bird

The use of skills and knowledge gained from the programme

Number of responses

Not at all 0

Occasionally 7

Not sure 0

Often 27

Frequently 7

(One parent replaced “often” with “sometimes”)

Confidence in using appropriate strategies at home to deal with issues that may arise

Not at all 0

Occasionally 3

Not sure 2

Often 26

Frequently 10

(The same parent again used “ sometimes” instead of “often” ... which can be understood given the difficulty of differentiating “often” and “frequently”. One might speculate or assume that “often” was generally taken to mean “ more than occasionally but hardly frequently ”, ie somewhere between occasionally and frequently in order to fit the 5-point scale.)

Confidence in using the skills/knowledge gained in discussions with professionals

Not at all confident 2

A little confident 1

Not sure 2

Usually confident 27

Very confident 10

Is the child statemented ?

Yes 35

No 4

In the process 3

No response 1

Current educational placement

Special school (ASD specific teaching) 16

Special school (other) 5

Special school or unit attached to

mainstream school or nursery 11

Mainstream school or nursery with

a support worker 6

No response 1

“Other” 4

(Independent school 2; Mainstream with supervision 1; Residential special school 1)

( nb The total in the 2 above tables is 43 since one family has 2 children with ASD)

What has been most helpful in child and family support ?

Starting at special school or nursery 17

Access to advice and strategies 14

(7 references were made to the value of such support soon after diagnosis)

Contact with other parents of ASD children 11

Social Services respite care 7

Support groups (eg Surrey NAS branch) 5

Holiday schemes (eg Disability Challengers) 5

Community Nurse 4

Crossroads (Saturday club) 4

Portage 4

Speech and language therapy (at school) 2

Home programmes (ABA) 2

Help to understand autism (and to explain

the needs to other family members) 2

Phone access to an adviser 1

Befriender Scheme 1

Health Visitor 1

Access to people with understanding

and experience 1

Learning about “ starting-doing-finishing” 1

“ Widget ” 1

Young Carers (for siblings) 1

Other (spontaneous) comments

There has been little or no support (beyond

that available via the school) 4

Support (such as Early Bird) needs to be

continued to maintain parental “drive” 3

All support, apart from that of the school,

has been a battle 1

Access to listed, additional facilities

Parent support group 19

Respite care 12

CAMHS 5

Holiday schemes 22

Specific groups (eg social skills) 4

NAS (national or local branch) 29

“Other” 12

(Crossroads respite care 3, Partnership with Parents 2, Private social skills group 1, PEACH 1, Rett Association 1, Young carers 1, Riding for the Disabled 1, “Autism Speaks” 1, “treating autism” 1)

Main concerns about current and future needs

Accessing the right educational place and

anxiety about transition(s) 18

Anxiety about changing needs over time,

and meeting the needs of all the family 9

Anxiety about provision after school age 9

Social skills and access to friends 9

Managing/understanding behaviour 7

Limited communication and language skills 5

Lack of respite care (or expense) 5

Lack of access to normal activities or groups 4

Need for “refresher” courses as the children

get older and the needs change 3

Access to support for medical needs 3

Risk of underestimating what the child can do 1

Dietary needs 1

The wearing need to anticipate problems 1

Public understanding of autism 1

Impact upon siblings 1

Anxiety over care for the child should

anything happen to the parent 1

No idea whom to approach among LEA staff 1

Adequacy of therapies (SALT/OT) 1

What support would you like in the future ?

More and ongoing respite care provision 8

Ongoing support/advice as the needs change 7

Ongoing chance to meet other parents (drop-

in centres ?) 7

Reassurance about educational provision (a

range of options) 7

Need for more information about what is or

could be available (less fragmentation) 5

More holiday schemes and greater awareness

of the individuality of the needs 5

Reassurance that services will be available

after school age 5

Opportunities for peer interactions 3

Help with managing behaviours 2

Support for social skill development 2

Play schemes 2

Babysitting services 2

Help in preparing for medical treatment 1

Sibling awareness training 1

Preparation for what the later years may bring 1

Advice on diet and food allergy needs 1

Help with school transition 1

An emphasis upon child need, not finance 1

Enhanced assessments of more able children 1

No faith in support provision 1

Other comments

Appreciation for the value of Early Bird 14

Need for a follow up course or refreshers 7

Need for public awareness raising of the

nature of autism and its impact 4

Critical importance of finding the right

school and preparing or transition 3

Increased contact between (mainstream)

school staff and advisory staff on autism 2

Lack of ongoing medical input 2

The value of contact with other parents 1

Need for everyone to be more proactive 1

Need for more research on causes of autism 1

“To end all the nonsense about inclusion” 1

The incompetence of LEA staff 1

Need for more provision for severe autism 1

Unhelpfulness of CAMHS 1

Value of an annual audit of SEN provision

to include parental views 1

Need for opportunities for social skill work 1

“You get nowhere unless you have the

money to do things privately” 1

Early Bird-Plus

The use of skills and knowledge gained from the programme

Number of responses

Not at all 0

Occasionally 2

Not sure 0

Often 13

Frequently 13

Confidence in using appropriate strategies at home to deal with issues that may arise

Not at all 0

Occasionally 5

Not sure 1

Often 9

Frequently 13

Confidence in using the skills/knowledge gained in discussions with professionals

Not at all confident 0

A little confident 3

Not sure 4

Usually confident 13

Very confident 8

Is the child statemented ?

Yes 15

No 13

In process 1

(nb The total here, and below, is 29 because 1 family has 2 children with ASD)

Current educational placement

Special school (ASD specific teaching) 1

Special school (other) 1

Special school or unit attached to

mainstream school or nursery 8

Mainstream school or nursery with

a support worker 11

“Other” 8

(All 8 reported to be in mainstream school with no designated and specific support but with supervision and ad-hoc assistance as required)

What has been most helpful in child and family support ?

A course like Early Bird + 6

Support at school 5

Home visits (learning to manage

behaviour at home) 4

Meetings and discussions with other parents 4

Learning how to manage situations correctly 4

Learning how the children have different

feelings/perceptions from one’s own 3

Access to someone to talk to 3

Access to someone who understands (no

need to fight) 2

Learning to be less worried about what

others think about the child’s behaviour 2

Statementing and access to 1:1 support 2

Speech and language therapy 2

Outreach support from specialist school 2

Privately funded extra speech therapy 1

Attending a specialist nursery 1

Support from paediatrician 1

CAMHS 1

(3 responses referred to having no support; and, in 2 cases, no response was given here.)

Access to listed, additional facilities

Parent support group 10

Respite care 0

CAMHS support 6 (+ 1 “still waiting”)

Holiday schemes 2

Specific groups (eg social skills) 8

NAS (national or local branch) 21

“Other” 1 (dietician)

Main concerns about current and future need

Anxiety about ongoing school arrangements,

support, and transition to senior school 15

Balancing the needs of the child against whole

family needs (and the impact of the ASD) 4

Problem behaviour (anger) at school 4

No great concerns at this time 3

Not being able to join peer-group activities 3

Problem behaviour at home 2

Insufficient supervision at school 2

Concern about the future 2

Social skill development 1

Child depression and low self esteem 1

Diet(and possible effect on behaviour) 1

Associated learning difficulty (literacy) 1

Lack of adequate therapies (SALT/OT) 1

Managing changes of routine 1

Absence of support for siblings 1

What support would you like in the future ?

More courses like Early Bird + as the child

gets older and faces new challenges 9

More opportunity to meet other parents

of children with ASD 5

Access to advice from professionals about

problems as and when they arise 5

Social/recreational activities for groups of

children with ASD (and families) 4

Assistance with transition to senior school 3

Access to local social skills’ groups 3

Continued statementing and support 2

Extra support to enable child to cope in

mainstream school 2

Someone to act as a spokesperson for the

child/family to ensure fair treatment 2

More direct and practical support 2

Access to more SALT and OT 1

A greater public understanding of autism

and characteristic behaviours 1

Advice about the support available in

work settings 1

Assistance for single parents with the cost

and practicality of attending meetings/activities 1

More respite care 1

Sibling support groups 1

Other comments

Appreciation for the benefits and support

gained from the Early Bird + programme 13

The need for ASD awareness-raising courses

in mainstream schools 4

The need for a wider range/choice of ASD

provision (not “ one size fits all ”) 2

The usefulness of increasing the availability

(sale?) of Early Bird packs 1

Unresponsiveness of LEA system 1

Summary and Commentary

What is most immediately evident is the considerable value attributed by the parents to both the Early Bird and Early Bird-Plus programmes.

The benefits gained in terms of gaining an enhanced understanding of the nature and characteristic “style” of the children, assimilating a series of practical strategies, and of access to practical advice about specific concerns are described by this current double sample of parents as very significant, especially when access to the Early Bird programmes is timed during the very challenging period soon after the confirmation of autism or ASD in the children.

It is the practicality of the advice and ideas and strategies which is most valued, coupled with the opportunity to share information and suggestions with parents faced with similar challenges.

The value of feeling that one is not alone in facing these challenges must, clearly, never be under-estimated.

This general and positive pattern of responses to the Early Bird experience is in accord with the findings of the initial evaluation of 2001-2002, and there is a further reinforcement of the critical need for access to support and advice as soon as practicable after the child has been identified with autism or ASD.

It is also in accord with the converging evidence in the literature that resilience among the parents, and their capacity to cope with the autistic diagnosis and the implications, are a function to a considerable extent of this access to practical help thus to be able to use their time and motivation for helping the child in the most effective ways.

However, the results of this present survey also suggest that parents are all the more positive about Early Bird or Early Bird-Plus because of perceived limitations in alternative means of access to practical support, particularly as the children get older and are well established in the school system.

The Early Bird programmes are relatively short term, and there is a clear need described by significant numbers of this present sample of parents for some form of ongoing support provision, formal or informal, given that the needs associated with autism and ASD are always going to be present in some form, and the challenges faced by the children (and their behavioural and emotional responses) may well change and increase with time.

The impression that one may draw from many of the responses is that there is a constant anxiety about what the future may bring, notably at the time of transition from one class to another as the children enter a new school year and face at least a change of class teacher and setting, with greater anxiety still about the transition from one school to another, especially when it is a matter of a move from the junior to the senior sector. Anxiety also exists about provisions in adulthood.

Alongside this anxiety there appears to be a corresponding concern lest there will be some change in the nature of the educational provision or level of support, with the possible implication that, while issues and challenges facing the parents and the siblings are continued or even increased as time passes (with a corresponding need for ongoing support), an apparently settled situation in the school setting may lead to some question about the need for maintaining such support.

Reference is typically made to “special educational needs”, but the needs apply equally to the circumstances at home and in the community, and there is a risk lest adequate scholastic functioning could mask social problems and associated emotional reaction reflected in maladaptive behaviours which may form part of an ever-increasing negative cycle.

The impression gained from the set of responses is that support is, or appears to be, fragmented, and that there is not seen to be a central source of information about all the sources of help and advice.

The result is that parents may depend considerably upon word of mouth information, or chance, to become aware of what is available; and the support provisions, such as respite care, appear to be unevenly distributed.

The concept of a “pack” of literature detailing specialist services and sources of advice, to be available to parents of children newly identified with autism and ASD, appears not to be something of which many of the current sample of parents are aware.

Meanwhile, one can only repeat that guidelines/advice that may be helpful for the parents of a pre-school child needs to be modified for children well into school age and those approaching adolescence.

This kind of concern appears to apply particularly to those parents involved in Early Bird-Plus many of whose children were, presumably, diagnosed with autism and ASD at a later time. It is possible that the lateness of diagnosis reflects a less obvious or less severe autistic symptomatology; and this possibility is supported by the report that a large majority of these children, in contrast to children linked to Early Bird, are placed in mainstream schools.

Evidence exists that children with relatively higher functioning autism or Asperger syndrome are at a higher risk than children functioning at a lower level for behavioural, emotional, or psychiatric problems.

This may reflect a belief that the difficulties faced by these children and young people are somehow less significant, and require less supervision. Further, autism and ASD are, by their defining characteristics, conditions with particular ramifications for social interaction and social communication; and, while placement in a mainstream school may ensure access to a broad academic curriculum, the mainstream experience with its complex and ever-shifting social stimuli and circumstances may highlight those very difficulties and underline the apartness of the individuals with autism and ASD.

Some references in the survey responses were made to the tensions of mainstream placement and some problems in respect of misinterpretation by staff of certain behaviours observed in the child with ASD. What is seen as negative behaviour may actually reflect the autistic “style” or indicate the presence of some anxiety or the result of a misunderstanding with peers; but some parents worry that their child may be punished when (s)he has no awareness of doing something wrong so that the outcome can only be to increase the anxiety and uncertainty.

A plea is made by some parents for peer (and staff) awareness-raising initiatives; and the implication is to avoid any underestimation of the difficulties that may be encountered by the children and young people who attend mainstream schools, and to continue to monitor progress with a view to anticipating and pre-empting potential problems.

In conclusion, one would repeat that the Early Bird and Early Bird-Plus programmes, as rated by parents in the current sample, are much valued, and the understanding, empathy, and practicality associated with the Early Bird presentation are highlighted as of major significance for parents who are seeking to acclimatise to the autistic diagnosis and to determine how they can support their child’s development and reduce the behavioural anomalies.

This positive rating matches the evaluation completed earlier, both locally and nationally.

However, the very experience of participation in Early Bird appears to have the effect, in at least some cases, of highlighting the apparent lack of subsequent support of a similar kind, particularly as the children get older and further into the education system.

Support may well be available, but the parental reports suggest some difficulty in identifying and accessing what exists plus some anxiety about (anticipated) conflicts about the nature or level of educational provison. It is evident that support is no less necessary with the passage of time but may be as critical or more critical, along with a recognition and understanding among all concerned of the changing needs and pressures.

* * * * * *

M.J.Connor March 2008