Families may make use of a number of support agencies. Types of support that would be used could include assistance with house work, membership of a parent’s group, such as Autism New Zealand’s Canterbury branch where parents can meet others who have children on the Autistic Spectrum. Networking through this type of group would enable the exchange of information.
A community support worker or other type of support could also be involved. The type of support that may be given could range from supporting the child in leisure activities to in the case of older clients, assistance with finding a job. Arguably, one of the more useful roles that a community support worker could take would be giving the parents the opportunity of having some time-out. A number of participants made use of some type of support.
9.10.1 Case study findings: Additional support avenues
Mavis and FrankMavis: When I was in acute needs, the support worker was only coming in to see Simon for an hour a week.
Frank: She would take him for a walk down to the play ground, let him have a look in the toyshop and that was it.
Mavis: Unfortunately, she put on the pressure to return Simon to mainstream schooling in two years … they only got six months worth of funding.
Frank: That is the thing too, the kid is going to be permanently on the spectrum but you only get six months of support, they must be thinking they will be able to solve all the issues in six months.
As with most of the support available, its availability is subject to available funding. As Frank observed, when a condition is lifelong support is liable to be required throughout a person’s life.
9.10.2 Survey findings: Additional support avenues
Support for siblings may also be used, in some situations. The additional stresses a child with ASD brings to a family could impact on the siblings. For a younger sibling it could be the lack of a playmate or in the case of an older sibling, problems could arise from the amount of time required to cater for the autistic brother or sister.
Jill: Parent to Parent - Support for self and sibling programmes, CCS Disability Action: Support for ASD child and parents. [I] have been very grateful for any and all support.
As the Autistic Spectrum covers such a wide area and the needs are so varied, the support that is available may be lopsided. Services for persons on the lower functioning end of the Autistic Spectrum may be more plentiful, whereas for higher functioning members, shortage of services was the case. It is possible to argue that prioritisation of services is the cause because of the assumption that a higher functioning individual would be better equipped to cope on their own.
Brenda: Very little available for Asperger’s, Autistics have a lot more care/provisions available to them. Aspies are just expected to get on with it
While this may indeed be the case, there would be certain areas, social skills for example, where support was needed. Gaps in service provision for higher functioning members of the ASD community were identified during the preparation process of the ‘New Zealand Autism Spectrum Disorder Guideline’ and these should be addressed when services suggested by the guideline are rolled out.
9. 11 Early Bird Programme: An education programme for
families of children with ASD
The Early Bird programme was developed by the National Autistic Society in England and was subsequently modified and adopted for use in New Zealand. It is essentially a programme to
educate the parents of children with ASD so that they are placed in a better position to cope with their child’s behaviour and to help develop their child’s communications skills. The Ministries of Education and Health jointly fund the programme and it is administered by Autism New Zealand. The term ‘Early Bird’ relates to the programme being offered to parents soon after a diagnosis of ASD has been received (Birkin, Anderson, Moore & Seymore, 2006). A number of research participants in this study have previously taken part in the Early Bird programme.
9.11.1 Case study findings: Early Bird programme
Pam and MikePam: We did that when Thomas was four, just before he started school; it was a bit ‘airy fairy’.
The style of delivery was seen to be a limiting issue of the programme’s effectiveness.
Pam: They [the facilitators] treated us parents as being a group of school kids.
An advantage of using a group situation to deliver the course was that it enabled the participants to exchange information with one another and to learn for other peoples’ experiences.
Pam: We gleaned more information from the other parents more than the facilitator. You were kind of made to feel that you had to go. You could not say that you could not go next week because it did not suit.
A difficulty in providing a course of this type would be achieving a common ground on which to base the course when individual participants’ needs and circumstances varied.
Pam: It did not make a whole lot of difference to us because we were more proactive than they wanted us to be kind of thing.
9.11.2 Survey findings: Early Bird programme
It should be noted that at the time participants in this study used the Early Bird programme, it had only just been introduced and that as time passed, the Early Bird programme would have evolved. Nevertheless, it is useful to hear the experiences of families accessing this programme in order that services continue to develop programmes in this vein.
Jane: The good part was [the] home visits by the facilitator who could address our individual needs. The part that did not work was that we were [the] only family in our intake dealing with [an] Asperger’s type child and most of the course was pitched at those who did not have speech … much information although [of] high quality, was delivered in a somewhat rote manner of reading from printed material, this made it hard to pay attention to.
By visiting the parent’s home, the facilitator would be in a better position to evaluate individual circumstances and in so doing, be in a better position to cater for the unique needs of individual families. A potential drawback would be the necessity for the Early Bird programme to cater for families with children right across the Autistic Spectrum.
Increasing parents’ knowledge of ASD would place them in a better position to cope with the demands ASD placed up on them. An advantage of group participation would be that parents would be able to discuss elements of the course with each other thereby obtaining an improved understanding of ASD. In addition, an opportunity to extend individual networks would provide further benefits.