Listening to Families Videos

Helen Wagstaff introduces the series. Helen was the Autism Coordinator - she is no longer in this role.

A list of resources is provided with each of the videos.

There is a list of all resources noted below this video. There are resources that are specific to each topic ie Explore, LifeLinks, MoE. These are listed below each of the videos in these topics.

Catherine Swan (Developmental Paediatrician) and Sharyn Gousmett (Educational Psychologist) explain the process to get a diagnosis. Catherine notes that the process varies depending on the age of the child and whether the family uses the public system or other avenues. She explains where referrals come from.

Sharyn confirms that private psychologists are able to do a diagnostic assessment and notes that families can self-refer.

Catherine Swan (Developmental Paediatrician) notes that the time for young children and older children varies. In some cases it’s not possible to make a definitive diagnosis, additional information is required and it can take 1 to 2 years. Sharyn Gousmett (Educational Psychologist) talks about the private process, collecting information and the role of assessments. If all of the information is available a diagnosis can be made in 4 to 8 weeks.

Sharyn Gousmett (Educational Psychologist) notes the important role that parents and the extended family plays in getting a diagnosis – they have the knowledge of the child!.

Catherine Swan (Developmental Paediatrician) explains why a child would be seen by a paediatrician. She talks about co-occurring conditions that run alongside autism.

Sharyn Gousmett (Educational Psychologist) notes that private specialists will refer to a paediatrician if they have questions that are not fully explained by autism.

Sharyn Gousmett (Educational Psychologist) explains that children are seen by a psychologist if there are learning difficulties – these are not things that paediatricians or psychiatrists look at. Psychologists also look at things like anxiety.

Catherine Swan (Developmental Paediatrician) explains when a child might see a psychiatrist.

Kim Russell (Mother of two autistic children) notes the benefits of having a formal diagnosis. Helen Wagstaff (Autism coordinator) notes that some organisations want confirmation of a diagnosis - talks about the positive way that children often respond to having a diagnosis. She notes a book that she often refers to families – Just right for you by Melanie Hayworth

Sharyn Gousmett (Educational Psychologist) explains that a diagnosis validates parents’ concerns.

Catherine Swan (Developmental Paediatrician) explains why an interim diagnosis may be given. She talks about environmental factors that might influence a decision and notes that time is part of the diagnostic process. She also covers global developmental delay and notes that a diagnosis is not required to access Child Development services or Early Intervention services from the MoE.

Sharyn Gousmett (Educational Psychologist) notes that waiting to confirm a diagnosis doesn’t mean doing nothing.

Sharyn Gousmett (Educational Psychologist) explains the services that are available to families while they wait for a diagnosis.

Catherine Swan (Developmental Paediatrician) notes further services and Helen Wagstaff (Autism Coordinator) confirms services that are available prior to a diagnosis. They note that self-referral is an option for many of these services.

Helen Wagstaff (Autism Coordinator) confirms services that are available once a diagnosis has been made and talks about who makes referrals to her and her colleague. She talks about the services that they provide including group sessions and individual visits.

Catherine Swan (Developmental Paediatrician) refers to LifeLinks and others that provide services

Kim Russell (mother of 2 autistic children) shares the services that have helped her and her family.

Catherine Swan (Developmental Paediatrician), Helen Wagstaff (Autism Coordinator) and Sharyn Gousmett (Educational Psychologist) acknowledge the services for families, talk about the gap in services for autistic individuals and make some suggestions to help families. They talk about what to do when a family doesn’t gel with a provider.

Helen Wagstaff (Autism Coordinator) talks about the support that she and her colleague provide for 2 years after diagnosis. She notes a resource package that has been developed to help families as the child ages.

Catherine Swan (Developmental Paediatrician) explains when a child up to age 16 would interact with a paediatrician. Sharyn Gousmett (Educational Psychologist) encourages families to address what’s on top for them at that time.

Sharyn Gousmett (Educational Psychologist) talks about the different presentations linked to gender. She talks about internalised autism and explains masking and scripting and the impacts of this. Helen Wagstaff (Autism Coordinator) talks about masking and the impact at home when a child is masking at school.

Tracy Rohan (Principal Advisor – Learning Support Canterbury) suggests who to talk to when a family has concerns about their child. She notes the role that the Ministry has and suggests that families call the Service Manager for their area. Tracy explains that’s a diagnosis is not required to get support.

Tracy Rohan (Principal Advisor – Learning Support Canterbury) explains that there is not a one size fits all for transition. She notes that good transitions start early, the importance of collaborative planning and that schools should be ready for the student. She talks about family initiated plans.

Tracy Rohan (Principal Advisor – Learning Support Canterbury) talks about the Ministry’s key role in removing the barriers to attendance. She also talks about barriers that sit in the community and the Ministry’s role in helping families to navigate the range of services and options.

Tracy Rohan (Principal Advisor – Learning Support Canterbury) explains what an IEP is and who is involved in the development of the plan. She notes that the plan may have multiple names – variations on a theme and discusses what is included in the plan. She explains how to get an IEP.

Tracy Rohan (Principal Advisor – Learning Support Canterbury) explains what an IEP is and who is involved in the development of the plan. She notes that the plan may have multiple names – variations on a theme and discusses what is included in the plan. She explains how to get an IEP.and the Ministry’s role in supporting the process.

Rachel Vink (Chief Advisor - Learning Support National) explains how the Ministry supports teachers. She talks about a specialist training program available to 300 teachers, partnering with organisations like Autism NZ (incl Tilting the Seesaw), and the role of RTLB and others with individual teachers. She also notes the Inclusive Education website that has information for teachers.

Rachel Vink (Chief Advisor - Learning Support National) confirms that every child has the right to be at school and notes the role of the Ministry to realise this. She talks about involving the school and Ministry in relation to availability of a Teacher Aide. She also discusses the involvement of others ie SENCO, RTLB.

Rachel Vink (Chief Advisor - Learning Support National) encourages a discussion about what the worries might be about partcipating in activities - schools perspective and families’ perspective. Having clear and open communication channels. If things get stuck involving the Ministry.

Rachel Vink (Chief Advisor - Learning Support National) notes that families and schools should reach out to the local Ministry if they have concerns about the level of support required for a student. She explains what the schools obligations are if the Teacher Aide is sick. She notes the importance of planning.

Rachel Vink (Chief Advisor - Learning Support National) explains that ORS (Ongoing Resourcing Scheme) is available to some children with high needs. She notes the collaborative process that is followed. She confirms that all of the information for an application is available on the Ministry’s website.

Rachel Vink (Chief Advisor - Learning Support National) notes that the Ministry has a set of guidelines that help parents and Boards of Trustees. The guidelines are on the Ministry’s website.

Helen Wagstaff (Autism Coordinator) asks Rachel Vink (Chief Advisor - Learning Support National) Tracy Rohan (Principal Advisor – Learning Support Canterbury) what their key messages are for families. Tracy notes that the Ministry wants to hear from families – when things are going well and when they are not. Rachel agrees with Tracy’s comments – confirms the importance of reaching out.

Kim mother of two autistic children talks to Helen Wagstaff Autism Coordinator about the process to get a diagnosis for her daughter and the challenges that she faced. She shares the process for her son and talks about the differences.

Helen Wagstaff Autism Coordinator notes the importance of ensuring that siblings get their own diagnosis

Helen Wagstaff Autism Coordinator talks with Kim mother of two autistic children about labels –some families want a label, others don’t. Kim shares her views on labels.

Helen Wagstaff Autism Coordinator explains to Kim why an interim diagnosis is sometimes given.

Helen Wagstaff Autism Coordinator notes that there are two ways to get a diagnosis in the public system. One is through Paediatrics – referred by the General Practice with supporting information. The other way is through CAF – the Child, Adolescent and Family mental health service. She also notes that families can go to the private practitioners.

Kim (mother) talks about her partner’s experience. She notes that people express support for the mother but often ignore the partner who is experiencing the same things.

Kim (mother) talks about her experience with her GP. She notes that GP knowledge and experience with autism varies between GP's.

Kim (mother) notes that Facebook and social media site scan be really helpful. She talks about the groups run by organisations such as Autism NZ and Parent2Parent. She shares the challenges she faced with parent groups

Kim (mother) notes the importance of beating the drum, and continuing to ask for advice. Also the importance of involving others.

Kim (mother) notes the importance of standing firm – not being bullied in to accepting advice that is clearly not right for your child.

Kim (mother) explains how isolated she was 15+ years ago when her daughters diagnosis was made She notes the resources and support groups available and how these remove the feelings of isolation.

James (father) and Sue (grandmother) share the challenges and frustrations of starting the autism journey with their son, grandson.

James (father) explains that he has used the autism label as a tool. He talks about how he has encouraged his son to respond – autism is a reason why he doesn’t do things not an excuse for not doing things

James (father) explains that receiving the diagnosis was confronting for him. Sue (grandmother) notes that it was a relief to get the diagnosis. They note the importance of acceptance and understanding it was nobody’s fault.

James (father) and Sue (grandmother) share their journey – they discuss the age that their son, grandson got his diagnosis. Helen (Autism Coordinator) notes the importance of taking steps to get a diagnosis if a family feels that there is something wrong with their child

James (father) talks about the importance of communication with the GP. He and Helen (Autism Coordinator) note the importance of getting information from the Early Childhood Centre to support the discussion with the GP. If concerned with the General Practice’s response seek another opinion.

James (father) talks about the agencies that provided support - notes the important role of Autism NZ. Sue (grandmother) encourages grandparents to get involved in courses.

James (father) talks about the role of LifeLinks – respite care, services and resources for the child and the role of other agencies. Sue (grandmother) explains her role as a grandparent and encourages other grandparents to get involved.

Sue (grandmother) explains the role of the Hapai Foundation and the needs that children with autism have that the Foundation can address.

James (father) talks about the strong support that he and his son have had from the education system. He explains that an assessment was required to access a Special Needs School and shares his sons experience at the school – the learning and growth.

ames (father) talks about single parenting and co-parenting. He notes that when the child is with you it’s important to engage with the child, he stresses the importance of consistency.

Helen (Autism Coordinator) notes the risks associated with Googling. She refers to the resources – web links etc that are provided as part of Listening to families package and encourages families to use this material to become well informed.

James (father) and Sue (grandmother) share their key messages. James notes the importance of acknowledging that there will be bad days and accepting that you are doing your best. Sue notes the importance of grandparents trusting in their children and their parenting.

Alison, Gabi and Laura introduce themselves. Laura talks about her interests in animals and cooking and her hobbies.

Gabi talks about the steps that led to Laura’s diagnosis and the support that was put in place. Laura shares her thoughts on receiving the autism label and the benefits of making the diagnosis visible.

Laura talks about her achievements at school and the challenges. Gabi notes the support provided by the Deputy Principal at secondary school. Laura talks about the lack of support systems available for neuro diverse students and the lack of understanding of some teachers and classmates.

Laura talks about her week including volunteering at the SPCA, interacting with Socially Speaking. She and Gabi talk about the challenges of securing employment – getting support with CV preparation and interviewing skills. They discuss the benefits of getting a drivers licence.

Gabi and Laura talk about Laura’s increasing self-awareness. Laura talks about sensory issues – the challenges of dealing with noise and the role of breathing exercises. The use of headphones with audio books and music.

Laura talks about establishing friends – the changes since school. She shares the challenges of time management.

Gabi talks about the positive impact on Laura’s siblings – better understanding of neuro diversity. Alison and Gabi discuss the changes in attitude that have occurred over the last 20+ years. They discuss parenting courses – the inference that this is a parenting problem.

Gabi notes that a parent knows the child best - if something needs investigating keep trying. Laura encourages those working with neuro diverse people to take the time to support them, be patient and understanding.

Michelle Skelton (Supervising Behaviour Specialist) and Sally Clayton (Autism Program Manager) note that Explore offers 4 different services. They explain which ones you can self-refer to and which ones you need to come through another agency. They note that to be accepted for all services except one you need a diagnosis.

Michelle talks about challenging behaviour and the Behaviour Support services Explore provides.

Michelle Skelton (Supervising Behaviour Specialist) explains the contracts that Explore has with the Ministry of Health - National Behaviour Support and Autism Support. Michelle outlines what’s involved with the programs within each contract. The benefits for families from the interactions in these programs is discussed.

The group acknowledges the very positive feedback from participants in the Teen Life program.

Sally Clayton (Autism Program Manager) confirms that Explore takes referrals from anywhere in the country and suggests the best ways for those living rurally to connect to services.

Michelle Skelton (Supervising Behaviour Specialist) notes that there are resources available to support families while they are waiting to be seen – she discusses these.

Sally Clayton (Autism Program Manager) confirms that all of the current Explore services are free.

Sally Clayton (Autism Program Manager) confirms that a new referral is required each time a family engages with Explore and notes the importance of having a new assessment for this referral.

Michelle Skelton (Supervising Behaviour Specialist) explains how Rapid Re-entry works

Sally Clayton (Autism Program Manager) suggests a process to follow if a family is not happy with the Explore team member that they are working with.

Sally Clayton (Autism Program Manager) explains that Explore doesn’t write plans for interventions at school but does work closely with schools in various ways to support a young person.

Michelle Skelton (Supervising Behaviour Specialist) notes that if required Explore will attend a meeting to develop an IEP.

The positive outcomes for families when they participate in group sessions is discussed.

Michelle Skelton (Supervising Behaviour Specialist) talks about Explores role in starting a conversation about siblings

Sally Clayton (Autism Program Manager) identifies Autism NZ and Altogether Autism as the key organisations.

Sally Clayton (Autism Program Manager) talks about the positive behaviour approach used within Explore programs. She notes that there are multiple elements in supporting behaviour change. Taking time to understand what is happening for the young person is a key part of the package. .

Michelle Skelton (Supervising Behaviour Specialist) talks about the importance of looking at why a behaviour is happening

Explore team members Michelle Skelton (Supervising Behaviour Specialist) and Sally Clayton (Autism Program Manager) share key messages from the discussion with Helen Wagstaff (Autism Coordinator) and Kim Russell (mother of 2 autistic children)

Pene Maddock (Facilitator) and Stacey Willis (Outcome Facilitator) introduce themselves. Pene explains what LifeLinks does and how LifeLinks helps families.

Stacey Willis (Outcome Facilitator) explains that families can self-refer to LifeLinks. Pene Maddock (Facilitator) notes the other organisations that might refer a family to LifeLinks. She also discusses timelines for provision of support.

Stacey Willis (Outcome Facilitator) explains what individualised funding is. Pene Maddock (Facilitator) explains what happens if a family’s needs change. They cover what is included in a funding package.

Pene Maddock (Facilitator) explains what information is required and the important role of the family – sharing their knowledge. Stacey Willis (Outcome Facilitator) talks about the Autism team within LifeLinks.

Pene Maddock (Facilitator) talks about the importance of supporting family members who provide support. She explains when carer support applies and also covers what happens when the carer support allocation has been used up before the end of a 12 month period. She clarifies tax implications for those receiving a payment

Pene Maddock (Facilitator) confirms that enabling good lives is focussed on ensuring that an individual can lead a good life

Stacey Willis (Outcome Facilitator) talks about options for getting respite. Pene Maddock (Facilitator) acknowledges that it’s not always easy to find someone and tallks about the role of friends and families.

Pene Maddock (Facilitator) explains that Whaikaha provides guidelines for fund holders. Different approaches by specific fund holders is discussed.

Pene Maddock (Facilitator) notes that LifeLinks will work with families to provide information that helps them with their journey – make it easier. There are no silly questions.

Pene Maddock (Facilitator) and Stacey Willis (Outcome Facilitator) share key messages for families’ – note that the LifeLinks team is available to support and are open to change