From Diagnosis to Support, Part One: The Kindergarten Years

74/365 - autism awareness.

Image by BLW Photography via Flickr

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.

[Link to Part Two]

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12 Responses to From Diagnosis to Support, Part One: The Kindergarten Years

  1. Jack says:

    Thanks for the overview.

    We started in a similar fashion, but a Plunket nurse was our first indication that something was wrong. We saw the pediatrician after a couple of months, the first visit they didn’t tell us anything, but asked us to come back in 2 weeks after a ST visited my son at playcenetre. After 2 weeks they confirmed he had ASD, we were in shock a bit. They gave us the forms for the supplement, some brochures and put up on the MOH waiting list. They also suggested we talk to the local non-government equivalent of MOH. It appears as though we can go down either path, both are funded by the govt. We started private ST, as his speech was to one issue we wanted to focus on, and it turned out the ST was from the NGO that we were suggested to talk to. After ~5 months after the diagnosis we were contacted by the MOH to start placement, we then contacted the NGO and they said our son could get a place starting the next term (this one now). We decided to go down the NGO path, mainly cause of the current ST and that all their services, music, occupational, early intervention and speech therapy are all in the same building. That’s where we are now, have tried to get an ESW through playcenter association, but that has turned into a nightmare, mainly cause we where not involved in the process of selection. The person has no idea about what’s required. I think the NGO will be a better providers of an ESW as they know what their doing.

    We were also denied the $80 a fortnight by MSD after submitting the application. Not sure why, maybe cause the report from the pediatrician said that out son has ‘mild’ autism. Not sure why she wrote that. Anyway a long conversation with some flunky at MSD and strong clear words from me they overturned that decision.

    • Really interesting and informative Jack. I’ve heard of other ways to get the services, and that different areas in Auckland (and clearly across the country), provide a different variety and amount of services. But I hadn’t heard such a comprehensive account before, thanks for that! It’s particularly interesting to see the differences and similarities in the journey to get support. A common theme I’ve found is families having to fight to get what they are entitled to, when those families are already under immense stress and still coming to terms with the diagnosis.

      • Jack says:

        Thanks, it has been a very windy road. We have only done one session at WEIT but I think its the right place for our son. Now we have to decide to stick with playcentre or Kindy. Would really like to hear your thoughts about the next stage as its where we are headed next.

  2. mamafog says:

    I’m in the US, it is so interesting to read about your experiences. Did your child get services at home or did you go to their offices? Did he go to a preschool? Did he like the therapists?

    • All good questions!

      The services were sometimes at home, sometimes at their offices. For example, the ST and EP were at home. The PT and OT moved between appointments at home, at their office (specifically a gym), and sometimes at the park. The therapists would often visit and observe my son at his kindergarten (preschool) too.

      He felt differently about the various therapists. He liked his OT a lot, was fond enough of his ST, largely indifferent to both his EPs, and not particularly fond of his PT. Adored his ESW!

      I’d be really interested in hearing about how the system for accessing support differs in the US too. I just had a quick hop over to your blog and noticed your most recent post about an IEP. It looks very much like what we call an IP (unimaginatively). So there’s at least one cross-over! Plus all those other acronyms that look so very familiar 🙂

  3. nzpam says:

    Very interesting to read about how your journey is going. My grandson is now 4yrs old and recently given mild-mod autism diagnosis. We live in Sth Ak and had been trying to have him assessed since he was 3yrs – we were pretty sure we knew what the diag would be, but needed an official one to access support (I have 2 grandkids in the US already diagnosed with Aspergers so we’ve educated ourselves on ASD’s).
    Plunket nurse has been amazing – she enabled us to get Special Ed, early intervention support worker. This SE lady referred him to paediatrician at Superclinic, so diagnosis happened. We are right at the beginning of our journey to get support in teaching our wee dude so it’s cool to see how others have done it. Please keep informing us, Love your blog, Thanks.

    • Thank you nzpam. It sounds like you’re keeping yourself well informed and taking an active interest in your grandson’s life, which is fabulous, he and his parenst are lucky to have you. So often extended family don’t know how to react and cut themselves off when faced with these sorts of challenges.

      All the best to you and your family.

  4. katherine says:

    this is fabulous, I too have a similar journey to yours – although I’m about to embark on the school system with my 4 year old son with Autism. I am led to believe there will be zero support for him when he turns 5 years old as the Education Support Worker tells me he is too high functioning to quality for Orrs. I am devastated, as he has had support worker at his preschool for 1 1/2 hours per session that he attends. I am hoping you have an updated page? Or could you email me if possible? Loved your blog, it certainly helps so much. x

    • Hi Katherine, you will still get support for him at school, even without ORS the school will have funds they can allocate to the needs of special needs students. I suggest applying for ORS regardless of what the support worker has told you either way. I’ll email you when I get the chance later today.

  5. katherine says:

    thank you very much, really appreciate your help with this. x

  6. jacinta says:

    Thank you for your posts in this subject. I am struggling to find info. Do you know where I would find the eligibility for the services you mentioned? I am trying to find out if my ASD son will qualify as he is an Australian citizen. (I am NZer)

    • Hi Jacinta. As I understand it, eligibility turns on being a New Zealand resident rather than a New Zealand citizen, so your son should qualify to access all key resources as long as your family is resident here. Check to make sure by looking at the relevant official websites, a simple web-search should bring them all up. If you have trouble finding the information or the websites you’re specifically interested in, please do come back and let me know and I’ll help as best I can.

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