Hard News by Russell Brown

Argh, that last story from Finn brought tears to my eyes. It was so hopeful.

Dianne's story stressed that he was self-diagnosed and that the mental health team didn't consider Aspergers as a factor. What does the high-functioning person have to do to get an "official" label of Aspergers or autism?

Argh, that last story from Finn brought tears to my eyes. It was so hopeful.

Yeah. You can imagine how I feel about it.

What does the high-functioning person have to do to get an "official" label of Aspergers or autism?

I honestly don't know -- in some parts of the country it's hard enough to get your kid diagnosed. But my hunch is that most adult diagnoses are self-diagnoses. That doesn't mean they should be ignored.

Argh, that last story from Finn brought tears to my eyes. It was so hopeful.

i suspected as much.

there's no way i'm reading it at work.

most adult diagnoses are self-diagnoses. That doesn't mean they should be ignored.

unless they're that bloke mentioned david cohen's book, the guy who claimed be was "profoundly autistic". from david's description he was in actual fact... an asshole abusing a convenient excuse.

What does the high-functioning person have to do to get an "official" label of Aspergers or autism?

I suspect - pay through the nose for an excellent private psychologist. One you've already checked out for 'a good fit' - their websites can be useful. The public mental health system only funds the "worst" cases, so unless you're very plainly psychotic, bipolar, schizophrenic, you won't get a look in.

From experience, trying to source help for a (now) 15 year old, I know it is extremely difficult. You might consider yourself an excellent parent, but as far as the authorities are concerned, a 'problem' child or teen is the result of bad parenting. Of course this is a cover for the fact there is not enough funding. You will be blamed and shamed. The best you're likely to get is a script for prozac. We at last got some real help from a clinical psychologist, but over three years out of the education system is a huge loss. It's using up a great deal of my time & energy to move forward, though I'm pleased to say he is happier and native wit & intelligence will go a long way (I hope).

Finn Higgins was known to users of the Public Address System discussion forums as a keen-minded, literate, witty and sensitive debater, and an asset to the community.

Yes. That's how I remember him.

From experience, trying to source help for a (now) 15 year old, I know it is extremely difficult. You might consider yourself an excellent parent, but as far as the authorities are concerned, a 'problem' child or teen is the result of bad parenting.

When I think of the crap we had to endure along those lines versus what we know now, it does make a bit angry, yes. Frankly, I think many people in the system simply don't understand autism spectrum disorders.

And options for ASD adolescents pretty much don't exist.

though I'm pleased to say he is happier and native wit & intelligence will go a long way (I hope).

Yay. Rock on with that native wit and intelligence.

When I think of the crap we had to endure along those lines versus what we know now, it does make a bit angry, yes. Frankly, I think many people in the system simply don't understand autism spectrum disorders.

Not to comment on either your situation Russell, or what happened to Finn.

But mental health is, and has been chronically underfunded in New Zealand for so long. Sometimes they get it wrong and should be held to account. But we devote SFA money to the system and as a result it lacks staff numbers, funds, resources, expertise, training, and often, people get into it with such enthusiasm and get burnt out within five years.

I have a relative who spent about 10 years working in child and youth mental health here in NZ, and an additional five years working in the Western Australian system. The difference in resources available is very significant. She's recently left the public system after being ground down to the bone and is now working in private practice and picking her clients.

There will always be stories where the only response is to be angry. People deserve the best help available, and they don't always get that. What's much worse for me, is that every expert review we have of this sector tells us that we need to make so much more available, and as a society we fail every time when faced with that challenge.

There will always be stories where the only response is to be angry. People deserve the best help available, and they don't always get that. What's much worse for me, is that every expert review we have of this sector tells us that we need to make so much more available, and as a society we fail every time when faced with that challenge.

Yes, you're right. And the Autism Spectrum Disorder Guideline released this year and the passing of the disabilities bill will help. Both of those cover people's whole lives, and not just the education system.

But what happened to Finn is still heartbreaking.

Finn Higgins was known to users of the Public Address System discussion forums as a keen-minded, literate, witty and sensitive debater, and an asset to the community.

Yes, very much so.

Whatever happened to the Mason Report?

I don't recall Finn well but I found re-reading his story simply overwhelming.

I can't imagine how he or his family felt when the health carers weren't responding to him. I feel very sorry for him and his friends and family.

I currently work in the NSW education system where there's a growing awareness of the needs of ASD kids and adults. The forecasts I've seen of enrolments over the next 10+ years are for a significant increase in people with disagnosed ASD. By significant I mean almost 30 per cent per annum! That's the trend over the last five years however I wonder if that's not partly about better diagnosis. We're exploring various strategies in partnership with relevant bodies, ASPECT being one. Let me know if I can help by putting you in touch with anyone here on the West Isle.

Thanks, Russell, for coming to our Autism NZ conference. Your session was really well received and there were people from various government agencies there who heard your message.

I agree with you about Matt. He gave an inspiring speech to the conference on the first day linking the personal and the political. He was soon dubbed ' the Minister for Autism', a title which I hope is prophetic.

Tears in my eyes too.

Matt is bloody good value. He similarly gives me hope for future leadership. We'll need it to turn the endless reports and platitudes into decent services and supportive attitudes.

The current situation fair pisses me off. I'm impressed with the huge strides in consumer-led change in mental health services, and the ongoing government investment in both grassroots networks and major marketing campaigns as part of Like Minds. When will we see the same for disability?

It's an absolute waste to all of us when someone like Finn can't find a way through life. We allow our elected representatives to carry on not investing in the support needed so everyone can contribute to their fullest potential. The cost of not making that investment is huge, even just looking at the dollars and not all the ways our lives enrich each other.

Bring on the change.

And I'd just like to say "thanks" to Russell for speaking so openly about your own son and advocating for ASD and for giving me a few ideas/options. It's helped alot to know one isn't battling away alone.

Some other posters on PA also gave me some good tips earlier in the year on negotiating the education hierarchy and these were useful as well.

We had a youth suicide in my family about 20 yrs ago - I'd eat razorblades to make sure it didn't happen again. Some good people are propping me up so I can hold the boy up - it's all little steps that are agonisingly slow, but compared to a couple of years ago, it is progress indeed.

And I'd just like to say "thanks" to Russell for speaking so openly about your own son and advocating for ASD and for giving me a few ideas/options. It's helped alot to know one isn't battling away alone.

That's great Kerry. Any time you want to say something, just email me (click the envelope icon next to my name at the left there) and I'll hook you up with a guest post at Humans.

I've taught many children on the autistic spectrum - some diagnosed officially, some not at all. I just want to take my hats off to all you parents who have children on this spectrum. Communication is such an important part of being human - and it entails such a lot. Knowing about verbal and nonverbal cues, being comfortable in a group of other people. Connection with other human beings is so important, and I know people on the spectrum find that sense of connection difficult sometimes. How frustrating that must be. And for children on the autism spectrum, how hard it is for parents to get proper help. Many will never, ever get help at kindy or school. And for teachers, it is often frustrating when a child hasn't been diagnosed, but you know. You just do. As Finn did. I remember one child I taught very clearly, who I was convinced was on the autism spectrum. He had an ESW at kindy for behavioural "issues" but when it was time to go to school, his parents wouldn't allow the GSE to make his school aware of any problems. I often wonder how he is getting on, and if his parents realised how difficult his life would be in a place with so many different people, who may as well have been aliens to him, for all the sense he made of other children. If only they had allowed us to arrange some help for him. And I deal with families like this at least a couple of times a year. So I am even more admiring of those parents, who fight hard for their kids to have an education that suits them, and to get the extra help that they may need to ensure that they have a happy and fulfilled life. For none of us is that a guarantee but every little bit helps.

Oh, I meant to say - has anyone read the book by John Elder Robison? He's Augusten Burroughs' older brother and was not diagnosed with Aspergers till he was 13 ( I think?). The book is called Look Me in the Eye. Very interesting chappie - his facebook is here

Jackie - I'm reading it at the moment. I was at the American Psychological Society conference last month where he was a keynote speaker. Just like Steven Shore and Matt Frost at our Autism NZ conference last weekend, he had many parents and professionals queuing up to question him about aspects of his life experience. By the way Temple Grandin has a new book out called 'The Way I see it', which is a collection of some of her articles on various aspects of autism.

du Fresne's attempt to frame every programming choice in terms of the alleged political orientation of individual guests -- rather than whether they've written a good book, done some interesting research or can tell a joke -- is strained to the point where it seems reasonable to ask if he has a chip on his shoulder.

A late response from me - but I've jut read Karl du Fresne's blog - good writing trying to stay afloat on the chip on his shoulder - which may be a little larger and less buoyant than a chip. What interests me is that the effect on the ensuing discussion is immediately polarising, something that doesn't seem to happen too often on this blog.