Enablers and barriers to parents positive experience of the diagnosis process

Initial Concerns
Barriers: Professionals may be reluctant to share their ideas or hunches with parents for fear of misdiagnosis resulting in the diagnosis being a huge shock and allowing parents no time to prepare themselves Parents reluctance to go to their GP as they feel unable to explain clearly their childs behaviour Parents concern that they will be labelled as a fussy parent or that they will be blamed for their childs behaviours Parents reluctance to share concerns and attempting to give the impression nothing is wrong Parents being asked about their parenting and feeling they are being labelled as bad parents

Enablers: Parents having their initial concerns listened to and accepted, not simply told to wait and see or that they are being too over protective Talking to other parents who have already been through this experience

New Zealand/ Nelson A family I am working with reported having their parenting skills questioned and having the finger pointed at them whilst seeking a diagnosis for the older child in another area of New Zealand.

Diagnostic Process
Barriers: Generally this can be a very stressful time for parents and other family members The reluctance of some professionals to assign a label can delay diagnosis further compounding stress and frustration levels of families and delaying the onset of interventions Parents being unsure who the lead person amongst the professionals is involved with their child The enormous amount of paper work parents are required to complete

Parents often find it difficult to recall information or examples of behaviours when put on the spot in an interview in which they are already experiencing high stress levels Perception that the diagnostic interview was a mere snap shot of their child rather than a full understanding Education professionals, who are often the first to notice concerns and share them with parents, have an insufficient knowledge of the diagnostic process Parents perceived understanding may not be as comprehensive as they first think The number of professionals involved can become over whelming for the parents, especially if they have to repeat the same information again to different people Disagreement between parents and professionals or between professionals Negative aspects of the childs behaviour being talked about when the child is present Appointments can be during school time so disrupting the childs regular routines Child being distressed during observation interviews

Enablers: Being given some indication of the type of questions they maybe asked at a diagnostic interview allows parents to prepare and recall experiences Parents feeling that they have had a comprehensive interview and the professional has built up a good understanding of their childs needs and behaviours Having a clearly identified lead person A flow chart to allow parents to understand how the diagnostic process will unfold

New Zealand/Nelson Among the professionals in Nelson there is a spectrum of willingness to give an ASD diagnosis adding an element of luck depending on which professional a family is referred to. In a conversation with one parent she expressed her hopes that her second child did not see the same paediatrician as the first child as her experiences first time round had been very negative and unhelpful. A health care professional reported that the process of diagnosis appears to vary from one health board to another across New Zealand. Child Development Services have provided a flow chart of the procedures involved in diagnosis to at least one family I am working with.

Disclosure of Diagnosis
Barriers: Receiving the diagnosis in a letter or phone call with no discussion or warning before hand Receiving a vague diagnosis, such as their child showing autistic traits A diagnosis that only looks at what the child cannot do and does not offer a positive outlook for the future

Enablers: Receiving the diagnosis in a face to face situation A diagnosis that looks at childs strengths as well and possible progress in the future Being told beforehand in which meeting the disclosure will occur Taking another family member or friend along when the diagnosis is given

Nelson Area One health professional reported parents asking them whether or not the letter received confirmed their child had ASD. The professional was also unsure about the information in then letter and had to seek clarification from the assessor. One parent I have worked with reported being told she could have a diagnosis of ASD if she felt that would help.

Provision of information
Barriers: Information given at the time when the diagnosis is received is often not taken in, or understood by the parents who are already emotional and feeling overwhelmed Parents finding the information difficult to understand owing to it not being in their first language or to the technical vocabulary used Parents confused by the acronyms used

Enablers: Information given in a written format but also explained verbally Sharing information at the point of initial concern about what ASD is, how it presents and how the diagnostic process works, helps to empower and reassure parents. It can also make a diagnosis easier to accept and not such a shock Support workers doing home visits means families do not have to arrange transport and childcare in order to attend appointments and eases the financial burden

New Zealand/Nelson The e-booklets available as parts of the New Zealand Autism Spectrum Disorder Guidelines are a valuable source of information for parents and teachers. Families that I have worked with who have read information provided by school, searched for information on the internet and openly discussed the possibilities of their child having ASD reacted to their childs diagnosis with a sense of relief and already have a good understanding of the road ahead.

Issues of Communication
Barriers: Parents being confused by the communications or feeling as if they are being kept in the dark due to the lack of transparent communication Communications received by being copied in to emails between professionals undermine the parents role and involvement in this process A delay in receiving results add to parents stress, frustration and concerns about what may lie ahead Parents being given generalised information and having to work out what is relevant to them and also wondering if their child will experience other mentioned in the information

Enablers: Parents appreciate transparent communication and being given chance to share their own views and perspectives with the professionals involved Being listened to in an understanding, empathetic manner helps parents to feel valued and supported and part of the process Confirmation of appointment dates or receipt of communications reassures parents they have not been forgotten about or dropped out of the system Parents being given information that is relevant to their child Positive wording around the disclosure of the diagnosis Having someone to help go through the information with parents after they have had time to read it Parents having a follow up interview that provides an opportunity to ask questions and share information after the emotion of the initial diagnosis has lessened.

Time
Barriers: The length of time between each step in the process can be perceived very differently by the professionals involved and the parents.

Enablers: Parents being given an indication of the time scales involved.

New Zealand/Nelson A local health professional reported the wait period of 3 months from referral to diagnosis and 1 month from diagnosis to support agencies becoming involved as being pretty good. These periods were perceived by the parent and school as being frustratingly long.

Support
Barriers: A lack of coordination between the agencies and professional involved A lack of awareness of what support is available A lack of support for other family members including siblings and grandparents Families having to arrange transport and childcare in order to attend appointments with support workers

Enablers: Use of the internet, family, friends and local support groups to add to and build on information from professionals Provision of supports available and how to contact them. Availability of post diagnostic counselling, especially for fathers who may find the diagnosis harder to come to terms with as they are at work during the day and may have less to do with the child than the mother. Parents being involved in the design and implementation of interventions for their child. Parents own knowledge, skills and competencies being valued. Having a support worker assigned to parents to help them through the process A holistic approach to the family and child

New Zealand/Nelson The NZASD Guideline p 198 recommends considering the appointment of a kaiarahi (guide). The local health board has an ASD Coordinator who works with families to help them get social and financial support and to be there at the end of the phone to answer any questions. A parent I work with reported phoning the coordinator on a number of occasions when she did not know who she should approach with a particular concern.

References
Braiden, H.-J., Bothwell, J., & Duffy, J. (2010). Parents' experiences of the diagnostic process for autistic spectrum disorders. Child Care in Practice, 16(4), 377-389. Education, M. o. (2008). New Zealand Autism Spectrum Disorder Guideline. Wellington: Ministry of Health. Getting the diagnosis - What and how. (n.d.). Retrieved from Raising Children Network: http://raisingchildren.net.au/articles/asd_diagnosis_video.html Munteanu, C., & Billenburger, K. (2009). Family functioning during the diagnosis process in families with children on the autism spectrum. Systematic Therapy, 3, 39-55. Open door autism. (n.d.). Retrieved from NZ on Screen: http://www.nzonscreen.com/title/opendoor---autism-2009 Parent's talk openly about autism. (n.d.). Retrieved from Care.com: http://www.care.com/specialneeds-parents-talk-openly-about-autism-p1017-q5796453.html Water, D., Forrest, J., Naylor, W., & Brower, F. (n.d.). Families' experiences of ASD diagnosis in the North West. Care Servies Improvement Partnership.