I’ve decided I should record the steps we went through, from diagnosis to full and on-going support for our autistic son. It was a very long and stressful journey, but worth the outcomes. I hope by sharing this other people will better understand what to expect for their own diagnosed child, and better understand what our families have to go through (specifically within New Zealand). To avoid it being an endlessly long post, I’ll try to keep to the steps as much as possible, and leave the emotion, frustration, successes and failures, for other posts.
The first step was initiated by us as his parents. I visited my son’s usual medical doctor, when my son was three years-old (in 2008), to talk about our many and growing concerns. The doctor observed my son, and interviewed me about his behaviour and development. He told me he suspected (in fact, was very sure) that it was autism. He referred us on to a developmental pediatrician at the local hospital.
We were warned it would take many months before we could get an appointment with the developmental pediatrician. During that time I made various inquiries with private specialists to see whether I could get a confirmed diagnosis faster. We chose not to go private since they also had huge waiting lists – we’d save some time but not much. And the costs for seeing the private specialists were significant.
During that waiting period we sought out help and advice from the main local autism charity. They gave us some simple tools to help us deal with our son in the meantime, but also advised that to get any substantive government support (in the form of therapists and funding) we first needed that specialist confirmed diagnosis.
The appointment with the developmental pediatrician at the local children’s hospital finally arrived. It consisted again of observing our son, but also of a large number of questions that I and my husband answered in as much detail as possible. The pediatrician had no doubts; it was autism. She informed us that she would pass our details on to a range of government agencies, including the Ministry of Health (MOH), the Ministry of Education (MOE), and Taikura Trust (who hold government funding for carers). She also filled out a form for the Ministry of Social Development (MSD), so we could receive the approximately $80 a fortnight that I get to help with the costs of having a child with a disability. (We continue to see the pediatrician about twice a year – she is the linchpin to all the support we would eventually receive.)
It would be many more months before we received any help from the MOH, MOE, or Taikura Trust. In those intervening months – after an emotional phone conversation with one of the therapists from the MOH, who apologized for the long wait for services – I was assigned a social worker (SW) from the MSD. He made contact quite quickly and supported me in speeding up the services from the MOH, MOE, and funding from Taikura Trust.
Once everyone was on-board, and at the peak of intervention, my son had all of these people involved in his life: From the MOH, a physiotherapist (PT) and an occupational therapist (OT). From the MOE, an educational psychologist (EP), a speech therapist (ST), an early intervention teacher (EIT). From the MSD, a SW. Once we had all the therapists in place and had them communicating effectively with each other, I told the SW his services were no longer required, and he dropped out of the picture.
Once my son had started kindergarten, we also got an education support worker (ESW) from the MOE, she attended kindergarten a couple of hours a day with my son. As time went by, the MOH services started to drop off – they are principally involved with younger children and their services are in very high demand, so they focus on enabling parents with knowledge and skills to help their own children. But I noticed my son’s ankles were rolling in quite severely and re-contacted the PT, who put us onto an orthotist for orthotic insoles. My son continues to see the othotist twice or so a year.
Every service I have spoken of, was free (the developmental pediatrician, OT, PT, ESW, SW, ST, EIT, EP, and orthotist). The only thing I have spoken of that I had to pay money for was the initial doctor visit, which was $12. Though even he let me return for a second visit for free since my son screamed virtually the whole time at the first visit, and he wanted to be able to hear what I had been trying to say!
Towards the end of my son’s time at kindergarten, it was time to start the steps of applying for services at school level. That application process and the different support we received through-out and after it, needs a post of its own – this is already longer than I intended for what it is meant to be. I hope some of this though has already helped clarify how the journey starts and where it leads. Please, do feel free to ask any questions at all, and I will post a link to Part Two once I have completed it.