"I don’t want to criticise other parents as every autistic child and every family experience of autism is different. But such stories can be harmful. They reinforce the view of autism as something abnormal and undesirable, and legitimise treatments that may or may not have any scientific validity."
Substitute disabled or another particular diagnostic label for autistic and you can see this applies across the board. If we can help people who experience very negative effects that's great, but we should still accept people as they are. Thankfully we are not all made the same, life would be much less interesting if we were.
Before the birth of the label "autistic" in the 1980s developmental psychology courses at university referred to such children as "withdrawn" or as "slow developers" - certainly less judgemental and less "clinical" decriptions for such a multivariate personality state..same with the all encompassing term "dementia" which can have 20 or more physiological and/or environmental causes?
Great post Hilary.
From my experience, parents want other people to love their autistic child for the perfect human they are, not the person they are not, or could be.
This, times a million. On Saturday, while parents of 'normal' children were no doubt running around doing Saturday morning sport and whatnot, our 5 year old looked up from the intricate drawing he was doing and told us "today is the day called the miracle of kisses." Too perfect for words.
I am totally bemused. I have never met anyone or any child whom I would label "autistic" (perhaps because I don't understand the definition of this syndrome)and I don't see anything other than an imaginative child in Mark's behaviour description of his 5 yr old, and charming quote about the "miracle of kisses."
I spent an hour or so with the now famous "autistic" animal production researcher Temple Grandin in the early 1980s talking together about handling yards for livestock, and did not find anything particularly "autistic" about her behaviour or demeanour either. Obviously I am missing something here, though I did follow the debunked vaccination debate in UK. Surely it's difference we should celebrate, and not conformity to mundane routines and expectations?
Seeing people how they are is a gift many do not have. But belonging to a group is as natural as standing out is.
My son is my son, a unique individual who at 2 years old was labelled as being on the autism spectrum. Can I choose to not use that label in the future? Sure. Can I rewrite the past and stop a doctor giving it to him? No I can't. So apologies if the use of it has caused confusion or bemusement. I'm 3 short years into a long journey.
I spent an hour or so with the now famous “autistic” animal production researcher Temple Grandin in the early 1980s talking together about handling yards for livestock, and did not find anything particularly “autistic” about her behaviour or demeanour either.
Perhaps you should read what she has written about herself. And tread carefully here, debunk, please. This is not a thread to clatter about making pronouncements. We know of what we speak.
I am, however, most envious of you having met Temple Grandin.
Viva la difference.
I worked at the IHC many years ago and we were taught to use ABA. It could be handy - ie, scaffolding behaviour and rewarding - but also outlandish - as when I was advised to put alum (a burning chemical) on a patients tongue to deter an 'incorrect response'. ie, the pain would stop the repetition.
I was horrified / didn't do it. Plus I liked my teenage clients spirited response - her refusal to 'play the game'. She was what we would call severely handicapped but a beautiful person with a sense of humour. ABA was just cruel, like treating humans like circus animals. It stripped clients of their dignity, their ability to chose.
I have no idea what the current version of ABA therapy is like, but parents, follow your gut instinct. If it doesn't feel right for your own child, you do not have to obey.
Sometimes the emperor simply isn't wearing any clothes.
For anyone interested in an insider view of autism, I recommend Temple Grandin's book 'Thinking in pictures'. She is proudly autistic and its an illuminating read.
Another insider view is provided in the clip 'In my language'. An autistic woman describes her world view and what language and communication means for her. Its an astonishing watch which flips what you thought you knew on its head:
ok, so Amanda Bags (the woman in the above video) is controversial, ie, is she autistic or not.
I guess what I like about the video is its defence of non verbal communication and the way it introduces a different way to think about how we think.
Several of us have met Temple Grandin. She has been to NZ at least once. The time I met her was a few years ago when she gave a seminar in Wellington for Autism NZ. She was coming here for McDonalds to promote humanely killed meat, and offered to do the seminar, which was very popular. She's a generous woman. The day was a fascinating insight into her world and how she saw it, and the afternoon an insider's view of autism drugs and symptoms. All very frank and practical. She was very chatty at the breaks and at the end said she didn't like eating alone and would anyone like to join her for dinner. I couldn't. But there are some aspie fans out there who are still smitten. I hear she has put out a new autobiography which should be interesting.
I love the way Amanda Baggs challenges stereotypes about autism (I think she uses that term herself) , particularly the need to use spoken words.
I enjoyed reading your post Hilary. It raises important issues.
And I say yay for 'the bad mother' (not bad parenting).
My son was thought to be somewhere on the borderline of the high functioning end of the spectrum. He had his own opinions re parenting - he liked to visit parenting websites and blogs and flame unsuspecting parents.
Its kind of funny... his comments would have been insightful but merciless.
And I did not know Temple had visited NZ.
I don’t know if this really belongs here but I have wanted to get this out for days.
A fair proportion of the work on the pathology* of autism points to early developmental differences that become manifest later in life. There clearly has been a struggle to identify a single common feature that would form the basis of a coherent diagnostic system. This is a problem for anyone figuring out how to help and damning for those who want a cure.
i) Without clarity over causal factors the concept of a cure is improbable if not impossible.
ii) The lack of an unambiguous diagnostic marker at birth or pre-birth means to say that key developmental differences are already in place at the time of identification. These differences are in all likelihood irreversible. In this context the concept of a cure is also redundant.
iii) Evolution provides a developing brain with a high degree of plasticity and the need for coherent environmental stimulus. This is part of what makes us human. Where a brain is formed differently shortly after birth the relationship between brain and environment continues on a different trajectory. This new trajectory is determined by the scope of the original developmental shift but it still continues and is shaped to a greater or lesser extent by environment. The combination of an unexpected trajectory and an unstable environment means to say that each autistic child will have different needs and in turn different brains.
iv) Different brains means to say that any attempt at treatment has to be on a case by case basis. The basic behavioural component of ABA has clear rules, but the environment in which it has to operate is multi factored. The key issue here is; does the behaviour analyst know what to reward and what not to? How would they know? This must involve a degree of trial and error at best. However both the expectations of society and what has worked in the past will be driving factors here. With this in mind trial and error gets harder as expectations conflict with the reality of a different brain that quite often cannot be described by the owner. The point here is that even if ABA were to be recognised as a useful way to steer development, it still needs a model of patient matching which comes back to a better understanding of the condition itself. Interestingly a possible alternative is a lot of structured observation (the sort of thing that siblings and grandparents can be quite useful for). What we have at present is a lottery.
Some other points:
Developing children respond to a diverse range of environmental cues. The life outside “treatment” remains and is influential in unpredictable ways regardless of the intent of caregivers. This can be a good and bad thing.
We have learned from injury studies just how adaptable brains can be. Many of the same life problems can be solved in vastly different but nonetheless effective ways. It happens all the time.
The very fact that I can write this is testament to the power of care, patience and to some extent maturation; I guess I got lucky.
At some point when I am a little more settled I may write about the discourses surrounding adult treatment and cures along with why I personally don’t care for TMS.
Writing like this does have consequences so if you will excuse me….
*What separates “difference” from “pathology” is a moot point - as eccentricity might speak to mental illness. This is the curse of psychology, in that much of what is discussed as illness/pathology has to be socially constructed. The people described as having a particular pathology" should where possible have a significant stake-holding in its construction and description. This is to my limited experience not always the case.
I may write about the discourses surrounding adult treatment and cures along with why I personally don’t care for TMS
Sing out when you're ready. We may be able to offer a guest post.
much of what is discussed as illness/pathology has to be socially constructed
and related to some notion of "normal" :)
The next big issue is pre natal screening for autism and deciding what exactly is the problem that needs to be eliminated.
deciding what exactly is the problem that needs to be eliminated
Don't want any more useless folk like that Einstein chap, after all.
"We know of what we speak"! Well in a parochial sense maybe. Suggest you Google GRANDIN+SYME+YARDS ..we have been research colleagues for some time and both written books though I would not be so foolish as to venture into neuroscience and neither should she - see the NYTimes review of her book - also reviewed in the Listener this week. Regards. I give up my brief encounter with Public Address..
I give up my brief encounter with Public Address..
If you're going to flounce like that when gently asked to tread more carefully, perhaps that's for the best.
A trudge to the roots of Autism. The New York Times May 13 2013 Davuid Dobbs
Sorry for posting this here: just back from a meeting of staff and parents of Ferndale School in Chch. The Ministry of Education (with Hekia's blessing) are proposing to move it into the 'super school' at Aranui, and merge the governance of all three of Chch's Special Schools.
It was weird because noone made any attempt to sell the idea. The school community has 6 weeks to decide if we back it, because, I gather, that's when the Aranui PPP needs to be signed off.
The mood of the meeting was mostly against, with a few guarded folks who wanted to hear more. Apparently advice from the local Ministry is that if the community don't back it, it shouldn't go ahead.
What the Minister will make of that is anybody's guess. It's unsettling, to be sure.
the Aranui PPP
bless the private sector