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The Herald on Sunday has a story about the death of Finn Higgins, noting that “an independent review of his situation shows that the mental health crisis team failed Higgins at every turn.”

Che Tibby is justifiably angry in response, and there are some useful comments under his blog post, including one from Finn’s mother, Diane Standen, who notes (as she did to me in an email) that both the review and the Herald story omit any mention of Finn’s Asperger self-diagnosis:

Finn was quite open in identifying Aspergers as an issue with the CATT team. That was ignored then and since in the two CCHB reviews.

The only people with enough information to substantiate Finn’s. conclusions about Aspergers are his family and his partner. We are all confident that he made a realistic analysis.

The treatment Finn received would have been distressing for any individual in that situation. For a person with Aspergers their experience and reaction would have been far more acute.

When faced with removal from his home he was articulate about his extreme fears and refused to go into an unfamiliar environment. This had been an issue for Finn since childhood. It should have been respected. The advice from his family in the UK, phone and home support in his home for 48 hours until his sister Zoe could arrive to take over should have been considered. If felt insufficient, mental health support could have been available in the home for 48 hours. That path of action was not taken and Finn’s suicide was the consequence.

So there are two issues here: the awful incompetence shown on behalf of Capital Coast Health Board and others once a course of action had been set; and the fateful unwillingness to accept Asperger Syndrome as a complicating factor in that action. It is, sadly, not unknown for psychological services in New Zealand to fail to understand autism spectrum conditions: in this case, the results were disastrous.

Meanwhile, Diane’s website Aspergers Syndrome Stories is up and running in Britain, and has its first story, a tale of success out of misery whose depiction of school strikes a chord with our family experience. There’s a breakthrough moment:

Things started to go badly, kept getting ill then depression started to take grip. Couldn’t see a future, everything felt black. There just seemed to be pain everywhere and I was the cause of it.

Things came to a head when I went looking for food one night and found my mum crying fit to bust in the kitchen.

I’d never seen that before. I never realised how much I was hurting her. I didn’t know what to do about it, didn’t know how to help her or myself but something must have broken through a bit cause when two days later she started to talk to me about a job advertised in a local bike shop I didn’t close off.

I let her talk me into going along. I wouldn’t let her come in with me but she waited round the corner.

I wouldn’t say my interview was a great success, I mumbled, shuffled, probably looked at my feet a lot. John must have been desperate but he took me on trial. I owe him one and lots more.

I’m going to try and blog a lot more often here from now on, but for now, I’ll leave you with the concluding paragraph of David Cohen’s blog post for the Guardian website’s higher education section Around the world, parents of autistic children are fighting for their future. It’s this:

While parents of autistic children act as an educational infantry in this global educational struggle, we are usually the least equipped people in the world – in terms of time, resources and energy – to be waging any kind of battle at all.

Amen.