Diagnoses

[sobr9000]

Hi,

I'd love to get peoples thoughts on ASD diagnosis. We went to see our ‘classic’ paediatrician yesterday for a check up. He naturally doesn't acknowledge biomedical since it hasn't been scientifically proven, although is interested in our overall progress. The meeting was fine, however it got us thinking a bit. In our case, our little boy is quite mild / high functioning – he has an ASD diagnosis, but it's much more related to speech & social delay that repetitive behaviours. The diagnosis was a little bit black box in a way, not based on much in the way of detailed analysis, but more on general discussion on behaviour etc. Plus, it seems the diagnosis becomes more based on historical behaviours, rather than how he’s behaving now, especially given we’ve seen so much positive impact from diet & biomedical changes (we’ve been working with Libby Weaver & Debbie Fewtrell). We’ve still got lots of progress to make, but we’ve seen significant change and hope for more to come.

So, I have a couple of questions. Firstly, for those with young children who are improving lots over time as a result of biomed etc, how are you dealing with a diagnosis? Is anyone changing or updating this over time? Or do we just stick with the original diagnosis, which becomes less relevant over time & focus on real life behaviour? I’m trying to get my head around this. Also, does anyone have any particular paediatricians you recommend for diagnosis in the Auckland area? I'd really appreciate everyone's thoughts.

Cheers,

Megan

[anita]

Hi Megan My young boy who is now 4 ,diagonsed two years ago we have done and still doing gaps diet, biomedical , rdi, homepathic. chiropratic we have a radical change for the better. We had diagonsed moderate autism . Lots of symptons have gone we still have some, he is 10 times easier to manage. I think he always have some things just a bit different but I would like to think him as recovered.

We see leila mason she has been brilliant because we were having a very hard time when we first met her. couldn't say enough good things about her work

I hope you keep getting a recovery cheers

[elainereber]

I have found that I gained very little from the two developmental pediatrician's we have seen in the last 2y3m. But the second visit recently did reconfirm the diagnosis which was helpful for an ORRS funding appilcation. I believe it is best to get a diagnosis with a team of people, as done in the UK I have heard, but I have never heard of that in NZ yet.

So I guess I come to the question of diagnosis with two more questions - what is to be gained from a re- diagnosis? and what is to be lost?

I see the diagnosis as a way to access services from MOH and MOE. And THAT'S IT.

I never refer to my children as being 'autistic' and more and more they are exhibiting behaviour and thinking that does not fit into the so called 'triad of impairments'.

If and when they are fully recovered in my eyes, I will get them reassessed by a team of professionals that I trust. I am on a 'casual' search for these, but there is no hurry.

'It's a marathon, not a sprint.'

[sobr9000]

Hi,

Those are great thoughts - thanks so much! It really helps to have others perspectives on these issues. Thanks also for the recommendation of Leila Masson. She sounds great! Great quote about it being a marathon, rather than a sprint too - that's so true. I do find that every so often when we have these types of meetings, it opens up other questions. It's so helpful to be able to get your thoughts.

Thanks again.

Megan

[elainereber]

You know Megan, the most helpful people for me are the ones who help me to know what to do this week... right now ... for my children. That's the way to foster progress in our children and in our capacity to grow with our kids.

Traveling together
To bring up a child in the way he should go, travel that way yourself once in a while. ~Josh Billings

Taken from the RDI parent forum.

[Joelle99]

Hi Megan,

Our diagnosis was only in March when our little boy had just turned 19months. As with Elaine we only saw it as a way to access things as we already had an idea that he was on the spectrum. I hated our appointment as the paed was not open minded about biomed and slightly patronising you know along the lines of.... there's nothing you could have done (pat on the back) he's such a good looking little boy.

Anyway we saw Leila Masson and Gina the following week and we have and still are seeing great results in what... 4 months.

As for a re-diagnosis we probably wont do that for quite a while or unless we need it for something but in general everyday terms I don't care what other paed's think (apart from Leila) - we are seeing the improvements and our little boy is now doing the small things that disappeard like giggling in his sleep, bringing toys for you to play with him or just to be next to you

[sobr9000]

Hi,

That's just fantastic! It's so wonderful to see your child change so much. Funny - we also had a comment from the paed that so many of the children he sees on the spectrum are very good looking

We're celebrating this week that our little boy has completed his second transition week to school and is doing so well! We are just so proud of him. It's early days yet, so we'll take it one week at a time. The next discussion will be between us, GSE & the school, re whether he needs an ongoing teacher aide. Everyone except us & the paed are currently saying he doesn't, so it will be an interesting chat! We're well prepared for it though...

Cheers,

Megan

[anita]

Hi I had a interesting day ran into a very old friend who is a school teacher who met our son today so he didn't see our son when we were at crisis point and living on 4hrs sleep a night for a year.

He got down and played with Shamus and he say in his opinion he didn't think shamus had autism the only think he could pick up is his speech is delayed. I Laughed and laughed I said that is recovery for you and a lot of hard work and money but I did smile we are getting there.

Thank good ness for people like leila and gina