The Advocate

Harold Doherty, autism advocate and advocate by profession put the following comment on the post - "the New McCarthy-ism".

"Tsk, tsk. How DARE, Jenny McCarthy express her opinions and how DARE Oprah allow her a platform on which to do so! The AUDACITY of a parent who doesn’t recite the ND Manual expressing their opinons about their child’s autism condition. Tsk, tsk."

There's something a little off here. The comment is a poor match for the contents of the post, almost as if any post, no matter the contents, will do as a platform for the gospel according to Doherty: ND - bad, whining - good. Not mind you that I know what ND means precisely but that's OK; Harold doesn't either. I should ask the man for a definition.

The point is that Harold routinely objects to any comment that could remotely confer a touch of the positive to autism, not even an 'it's not all bad' sort of positivity. Why is that?

Look at this laudatory post:

"The Abernathy's did all they could to help their son overcome his severe autism but finally the disruption in the lives of family members and the violence that Colin inflicted on his mother, the bruises and bite marks, were too much. Colin's mother made the gut wrenching decision to give up her son to the care of the state. As the article indicates it was the right decision for all, including Colin, who benefited from the care and attention he was able to receive. This is a story that all who truly want to understand the realities of severe autism should read. The Arizona Republic, and reporter John Faherty, deserve full credit for telling a story that will not be told by Dr. Gupta and CNN or featured in a Hollywood movie. The Abernathy family - Teresa, Jim, Connor and Erin, all deserve credit for their courage in telling their story, and Colin's story, to the world."

Now Harold has many times emphasised that he is dealing with 'severe' autism and that he's fighting in New Brunswick for residential facilities for autistic youths and adults. And, as so noted in the post above, giving up your autistic child for the sake of the family is a courageous thing to do. Therefore, there will be no looking askance at the families who do so. I quite agree. I wonder how much elder abuse, abuse of autistic children or abuse of any dependent really could be avoided if folks woke up to the fact that people are entirely variable in their capacity to deal with things. For many children, they will face a lifetime of abuse, neglect and God knows what all by staying with the family. On the other hand, the evidence is stacked up knee deep that institutionalisation is seriously harmful for sentient creatures. Kanner said as much. Inmates are also many times more vulnerable to abuse of all kinds. See Amanda's very informative blog for chapter and verse on exactly what institutions get up to.

One can see Harold's difficulty. We got rid of institutions because of the terrible effects they had on people and because the abuses were so endemic that they could no longer be swept under the rug. However, nothing was put in place to support alternatives and crazily enough, there are some who actively try not to implement alternatives that are supposed to be available. See Amanda's blog for how difficult it has been for her to access what must be the most economical option - supported independence. Now how do you go about reversing the de-institutionalisation trend,when your heart's desire is to reinstitutionalise?

Pretty much as Harold seems to be doing. On no account can you admit to there being anything positive at all about autism. To get round the mountain of bad press about institutions, you need another mountain of bad press about 'severe autism' and it's horrible effects on family life, health and finances. No wonder the ND ers are persona non grata in Dohertyville.

Also, 'severe' and therefore 'able to be institutionalised' will be in the eye of the beholder. We know about this one courtesy of the Judge Rotenburg Centre. It took no time at all before painful electrical shocks were used for behaviours that were not 'severe' by any reasonable yardstick.

I wouldn't mind too much that Harold is campaigning to have his child locked away at some point if I could be sure that his efforts could be confined to his own backyard. But that 'bad press' he's so keen on combined with the very slippery definition of 'severe' that some of these folks employ and I can see this coming to haunt the wider autistic community. Also, the old adage about catching more flies with honey than vinegar comes to mind. If folks think that there are possibilities, they tend to be more inclined to supply the resources. The drive to label kids as autistic rather than retarded tends to support that.

Of course Harold is having a bet each way - lots of ABA without which your child is practically guaranteed life in an institution but just in case it doesn't work.....

California Dreaming

In the light of writing those compositions we were, universally, I think, afflicted with in elementary school – “What I did on my holidays”.

In this case, while changing hemispheres, we took advantage of the route and had a little look at California, which is a remarkable state with lots of features, among which:

San Francisco: a metropolis of sophistication and it’s really beautiful as well. We were there on July 4 and it was delightful to see all the hampers and deck chairs traveling to some scenic spot to make the most of the day. It was also surprisingly cool.

Autism Diva: On the way to the Sierra Nevada we dropped in to see the Diva. In case you don’t know – she’s really pretty! And while that’s important for some she’s really bright too! I can’t say we solved the problems in the universe in a couple of hours and I don’t think we really tried but it was a nice chat and I would have liked to be there longer except for one little thing__

Central California – home to orange trees – lots of them and temperatures of around 45o Centigrade. Not too surprising that the hottest place on earth, Death Valley, isn’t too far away. I don’t like the heat that much - and I grew up with temperatures like this. It’s no fit place for humans in Summer.

Sierra Nevada – or Grand Sequoia National Park: Totally awesome. The majesty of the trees and the setting takes some beating.

Los Angeles: - Had to go there – have a family of movie buffs etc. It’s composed of equal parts tacky, California beautiful and run down. Burbank is all business. We met that typical US social indicator there – poor service. And they do it really well – appear to be really helpful just short of actually doing anything. It’s a quiet rebellion I think and the capitalists should take note – pay peanuts – get monkeys.

Big Sur: advertised as the most beautiful coastline in the world, and for once the advertising is right on the money. I should add that the driver on this expedition did a remarkable job of handling a yank tank and the processions of palaces on wheels.

Silicon Valley: Continuous suburbia for forty miles in any direction. Looks brisk and purposeful.

And that’s about it until we hit destination - the capital of the second largest nation in the world - Ottawa, Ontario. I have a theory about designated capitals – they usually end up on real estate that nobody especially covets. Canberra is usually described as a waste of a perfectly good sheep station and it could have been plonked on beautiful Twofold Bay. Brasilia is in the middle of the Cerrado, which is quasi monsoonal and the altitude is trying. Ottawa has some swamp-like features and the humidity in Summer would give Singapore serious competition. That said, it’s gorgeous – green, spacious, can walk everywhere (where we are at any rate). I don’t care too much for the grand metropolis, so this is perfect. The people are really hospitable with an interesting quirk. I thought I was suffering from a fairly common phenomenon – we do things different back home and different always translates in the mind erroneously as better. But no, others have noted that Ottawa seems to prize incompetence and overly values petty rules and regulations and that is surprising for a well educated population, where the pay rates as I understand it don’t sink to the menial as they do in the US. I’m wondering if the lack of capacity might have something to do with an undue emphasis on the interpersonal, so much so, that the essential – actually being able to do whatever is required has been swept to the margins. It’s somewhat baffling to be confronted with so much amiable idiocy and no one seems to have cottoned on to the fact that saying ‘I don’t know’ is better and less harmful in the long run. It saves having to undo the erroneous advice as well as actually getting the thing done. I also think that this has some bearing on the pitiful state of autistic inclusiveness in decision making processes. If the interpersonal is pre-eminent, then what autistics have to offer becomes devalued in this society – to the detriment of that society in fairly obvious ways.