A Diagnosis of Autism Spectrum Disorder:

1. A Diagnosis of Autism Spectrum Disorder: Demystifying the Process and Supporting the Family 2009

2. From the parental perspective… Why is a diagnosis of ASD (or anything) important: • To begin to understand what it is that makes their child ‘different’ and to have an accurate name for it. • To temper feelings of responsibility or guilt • To plan for their child’s present and future – treatment for one • To establish eligibility for services • To determine if other or future siblings are at risk, i.e. if ASD is confirmed in this child then the risk for having another child is less than 1 in 5 • To be prepared for the fact that if the child test positive for ASD then as an adolescent they face an increased risk to have a seizure or develop epilepsy than other children their age. 2009

3. Assessment & Diagnosis – The Stress! Issues: • Frequent struggles in either acknowledging a problem themselves or having referring physician acknowledge a problem “From http://oreilly.com/medical/autism/news/getting_diag.html We began asking our pediatrician questions about Joseph's language regression at fifteen months, but she ignored our concerns because she felt his skill with letters and numbers precluded any developmental disability. She actually discouraged us from seeking Early Intervention when he was twenty-four months old. She said we might be uncomfortable since "the other children are more severely impaired.“ --Jennifer, mother of three-year-old Joseph (Asperger like and autistic-like features, diagnosis still in progress)” 2009

4. Lengthy waitlists in most regions for publicly funded assessment and diagnosis

5. The two tier system, the cost of a private assessment, the process of arranging a private assessment 2009

6. Fear –preconceived notions of what autism is, lack of accurate information about the process, stigma, sense of powerlessness and intimidation 2009

7. “A whole year after our initial concerns began, we got the diagnosis. This is ridiculous. I can’t help but think how much better my son may have been and how much extra help he could have received. Everyone says ‘early intervention is key.’ Well, we tried to get it for him and no one would listen. I think a major problem is that people, including physicians, are not aware of the Autism Spectrum. People think autism, and they think of the worst-case scenario. They don’t realize that people with autism can make eye contact and speak and do all sorts of things.” Excerpt from Living & Working with Children with Autism Spectrum Disorder in British Columbia Chapter 1 The Diagnostic Process in British Columbia (www.actcommunity.net/AI/Manual/ACTManualCh1Nov08.pdf ) 2009

8. From http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1048&a=2224 "When I was diagnosed as having Asperger syndrome a year ago, it brought an overwhelming feeling of relief, together with a deep sense of pain of 25 lost years. Before I was diagnosed, any help I received failed due to a lack of knowledge and understanding of my difficulties. This is one of the reasons why it is vital that a diagnosis of autism or Asperger syndrome is made as early as possible A five-year-old has the potential to make so much more progress than someone who is 25." William Rice ----------------------------------------------------------------------------------------------- "Many families feel that they are left dangling in mid-air, all management plans being delayed until a firm diagnosis is made. Achieving a diagnosis then becomes an overwhelming priority for the families since it appears as if it is the golden ticket to all the treatment/management programmes the child may require. Imagine how it must feel to believe that you are being denied a diagnosis, and, by implication, the route to help for your child. It is easy to understand why many parents feel relieved when a diagnosis is made. It may not be until later that the full implications begin to take their toll." Cathie Scothorne, GP 2009

9. Supporting the Family What You Can Do as a Professional If you don’t know already take the time to learn about Autism Spectrum Disorders. There are many sources of good information: • The internet (e.g. www.actcommunity.net, http://www.autismvictoria.org.au/diagnosis/ or http://www.autismvictoria.org.au/diagnosis/characteristics_checklist.php ) • Books and Journals • Workshops and Webcasts ( see www.actcommunity.net) • Specific questions answered by Information Officers at ACT - Autism Community Training Suite 240 – 2250 Boundary Road, Burnaby, BC, Canada V5M 3Z3 Toll-free 1-866-939-5188 or 604-205-5467 Fax: 604-205-5345 info@actcommunity.net 2009

10. Awaiting an Assessment: Support parents in their efforts to negotiate the system, for example – explain that they can contact their Regional Referral Coordinator at the BC Autism Assessment Network to ensure that the referral from their child’s doctor has been received. Advise them to record the date, name of the person they spoke to and what was stated. Suggest that they make monthly calls to determine projected wait time remaining. Support parents who want to consider advocating with other parents to improve the system so waits are reduced. You can suggest they contact ACT for information about how to do this. Help parents understand that there are some things they can do to help support the development of their child while awaiting for an assessment whether it turns out they have an ASD or not. (e.g. Infant Development if they are under 3, accessing public speech language services in their community, at home activities with their child they could do to enhance language development, joint attention, etc. Supporting the Family 2009

11. Supporting the Family • Prepare for the Assessment: • Suggest they read Chapter 1 The Diagnostic Process in British Columbia from Living & Working with Children with Autism Spectrum Disorder in British Columbia: A Manual for Parents & Community Professionalsavailable online at http://www.actcommunity.net/AI/Manual.htm You should read it too! • Talk to them a little about who they can expect will be assessing their child – a pediatrician, psychologist, psychiatrist, speech language pathologist, occupational therapist . Note they are very unlikely to see all these professionals! • . Explain to the parent what the assessor will be looking for i.e. the way the child communicates, socializes and behaves. Talk to them about some of the assessment tools that will be used and for what .In particular explain to parents that they will be participating in an Autism Diagnostic Interview (revised) and that they should be prepared to answer questions about their child’s early development before age 3. (If the child is older and has siblings this can challenge a parent’s memory!) 2009

12. Preparing for the Assessment cont’d • Prepare them for the possibility that depending on where the assessment occurs it, there may be multiple appointments on the same day and that it can be exhausting for them and their child. • Prepare them for the likelihood that they will not be given a diagnosis on the day of the assessment. For children under 6 a multi-disciplinary assessment is conducted and professionals consult with each first. They will be invited to a meeting to discuss the diagnosis and to review recommendations at a later date. • Suggest the parent contact the Case Manager at their Regional Autism Assessment Network if their assessment is a through BCAAN. This professional, usually a nurse or a social worker can be very helpful in explaining the process and answering questions. • Suggest the parent contact an Information Officer at ACT – Autism Community Training if they have other questions. Phone 604-205-5467 or 1-866-939-5188 or email info@actcommunity.net 2009

13. From http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1048&a=2224 "The non-specific and variable nature of the autism spectrum does not make it easy for a parent to identify a problem. It is easier to describe a pain in the leg than a feeling that something is not quite right.“ Cathie Scothorne, GP ------------------------------------------------------------------------------------------ "Any parent of a child with a problem will have anxieties: about the nature of the problem and its short- and long-term implications; about day-to-day management: and about reactions of siblings, relations and friends. This may well be compounded by feeding and sleeping problems so prevalent in children on the autistic spectrum. These anxieties need to be acknowledged, and, where possible, practical advice given. Although a clear-cut diagnosis may not be possible, this does not mean that professionals are unable to support and advise the family in behavioural management while assessment is in progress." Cathie Scothorne, GP From http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1048&a=2224 "The non-specific and variable nature of the autism spectrum does not make it easy for a parent to identify a problem. It is easier to describe a pain in the leg than a feeling that something is not quite right.“ Cathie Scothorne, GP ------------------------------------------------------------------------------------------ "Any parent of a child with a problem will have anxieties: about the nature of the problem and its short- and long-term implications; about day-to-day management: and about reactions of siblings, relations and friends. This may well be compounded by feeding and sleeping problems so prevalent in children on the autistic spectrum. These anxieties need to be acknowledged, and, where possible, practical advice given. Although a clear-cut diagnosis may not be possible, this does not mean that professionals are unable to support and advise the family in behavioural management while assessment is in progress." Cathie Scothorne, GP 2009

14. Hearing the News Support when it’s the Big ‘A’ Parental Reaction • Reports from parents about hearing the news – relief, confusion, grief, etc. • What do parents actually hear at the meeting where the news is shared? • Reactions that come later for parents – the sense of loss, what are realistic expectations for my child, how can I parent a child with this challenge, what about the siblings, etc. • What’s next? – interfacing with the ‘system’ and planning intervention 2009

15. Contact Information • info@actcommunity.net • www.actcommunity.net • Tel. (604) 205-5467 • Fax (604) 205-5345 • Toll Free 1-866-939-5188