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But, if you are not sure, I think it's relevant to have a discussion as to how we
should judge between these perspectives. I think the best thing to judge between
these points of view and what is most helpful and what is most -- makes the most sense for
autistic people and our family members and the professionals that support us, is not
political correctness. It's not any type of a high academic
rhetoric. It's really something very simple; and that is, what helps people more?
What has more of a possibility and more of a practical reality of improving people's
lives?
Lovaas, the founder of a prominent school of autism, early intervention called
behavioral analysis, found in early experiments his goal as to what would show
success as making autistic children, quote, indistinguishable from peers, end quote.
I think this is a very instructive goal that we can apply to the broader cure
movement. They have an idea of what normal is.
And they want to make autistic people, you know, in line with that.
Indistinguishability. Is that useful as a goal?
Does that relate to people's practical aspirations? I think the average autistic person and
the average parent and the average sibling and the average grandparent has some very specific
goals.
They want their child to be able to communicate as effectively as possible.
They want their child to be able to make friends, be included in their local school,
maybe grow up and get married someday, be able to hold a job and have happy lives.
Is indistinguishability in any way connected to that?
Is there only one way to accomplish those things?
The cure argument essentially says, you have these autistic people and they have all
of these problems in these particular area, we will develop a cure, they will become
normal people, and they won't have those problems and then have the quality of life.
The neurodiversity social model is, you have autistic people who have challenges in a
variety of areas, let's focus on services, support and education -- and some things that
some people would call services and supports, and some people would call treatment, you can
use whatever word you would like -- you know, focus on addressing those problems and
helping people with things that will help them have more quality of life.
Start from the premise not how is this person different from this conception of
normal. But what does this person need in order
to have for themselves and their family aspire to them as well.
That is a more practical, direct approach for achieving quality of life for
people. When put in that light, the question I
have for the proponents of the cure who say, how can you believe in abandoning the search
for a cure and dooming all these people is, is there actually anything that you can do
with the ideology and the philosophy and the approach of cure that you can't do simply by
focusing on improving people's quality of life through the most direct means possible?
And that is the core of the neurodiversity approve.
I think that's a critical component to consider when choosing between these two
ideologies. Another question that comes to mind is,
does cure do harm? Does the ideology of cure do harm?
If it's not doing any good, is it doing anybody any harm?
Because it could be said that, you know, well, cure is just this word that's needed in
order to raise money. A friend of mine who used to run an NIH
institute said, you know, I wish we didn't have to talk about cure.
Frankly, no condition, whether it's a disability or disease, is actually fully cured.
I mean, cancer and other things go into remission. But we need to talk about "cure"
in order to raise money. If cure doesn't do any harm as an idea,
well, maybe that's not a problem. I would argue the ideology of cure and
the objective of cure and the finding of normalcy and indistinguishability from peers
as the objective, as what we are striving for in advocacy and research and treatment
and
intervention, education, there is, and I think if you are coming from another minority
group's experience, you often get to see a lot of writing and discussion on this, a very
significant challenge people have when they have to spend their lives pretending to be
something that they are not, and they are taught from a very young age, I think a lot
of gay and lesbian people will tell you this, a lot of members discriminated against
religious minorities will tell you this, they are taught from a very young age, the way you
naturally would be is wrong. The way you most naturally present to
the world and process to the world is not just something that can cause you problems
because some people don't like it, but it is wrong; it is a sin.
And to do what is perceived as normal is a virtue.
And this is often what the cure approach ends up in.
A lot of attention and focus is spent on encouraging young autistic people to make
eye
contact. Many of us don't do very well reading
expressions from faces. Eye contact may or may not actually be
that useful to us. Many of us feel more anxious making eye contact.
But very often young children and adults will be reprimanded for not making eye
contact, or will be reprimanded for rocking back and forth, or stimming or for
recognizing that sometimes they are overstimulated and they have to step out of
the room, or for sometimes needing help to communicate, and needing to communicate in a
different way. And any number of other things are taught not only as things that other
people
have problems with, but things that are wrong to the point that when people do grow up and
need to use these things to get along in the world, because nobody to date is suddenly
becoming non-autistic, they feel guilty. And we are taught to feel guilty.
We are taught to feel guilty about doing the things that help us cope with the world
around us. And so there is real harm to that is
brought about from this really teaching of passing as a virtue.
It's not something you might have to do in a job interview for 30 minutes.
It's not just something you might have to do when you are presenting somewhere.
But pretending to be normal is something that is objectively good in and of itself,
according to this philosophy, costing those people very real and psychological harm.
I think ideology cure is a missed opportunity for the autism community, on a
practical level. If we put one tenth of the amount of
money, advocacy, research, countless other things that we have put into this quest for
a
cure into researching the kinds of technologies and educational interventions
that might empower autistic people who struggle with speech, for example to
communicate, or into researching what is the
best way to support an autistic student at any place across the spectrum, in a middle
school or high school environment, or what is the best way to improve access through
services and supports for adults, or to support people to get jobs or to succeed on a
college campus, we would see immeasurable progress towards those practical and
immediate goals which have immense impact on people's lives that we haven't put the
money
and invested into those things. If you look at the interagency
coordinating committee, a federal body -- I serve on it; I was recently appointed to
it.
If you look at the research portfolio that they put together every year for the
last few years, and you look -- the research portfolio assesses both public dollars and
private dollars, both NIH and other government agencies that fund research and
also private groups like Autism Speaks and the Simmons foundation.
They assess where that research dollars -- those research dollars are going to.
The amount of research that is spent on services, researching how to improve
services, researching the most direct way that people interact with things that help
their quality of life was, in 2008, 1 percent of the total autism research budget.
I think the 2009 figures are about to come out or they may have just come out.
If memory serves, it was about 3 percent. Congratulations, there was a marginal improvement.
But clearly something is out of balance here. And we are seeing some tremendous missed
opportunities. And we wouldn't be seeing that if our
focus was on the practical goal of the quality of life, rather than cure.
I have a little bit more time left before we move to questions. I want to just spend
a little bit of time talking about what a neurodiversity
friendly approach, and neurodiversity friendly world would look like, both in the
context of the advocacy movement. So what should autistic people and our
family members and the people who want to support us be doing?
Also in the context of sort of the ideal world that might result from that.
In the context of the advocacy movement, I think, you know, I think I have been fairly
clear, that autism, what a neurodiversity friendly autism advocacy movement would like
is somewhat similar to the current disability rights movement in its primary focus on
services and supports and education and civil rights and access.
It would also be recognizing that there are different needs very often and very
different kinds of obstacles that might present a challenge.
A person with a physical disability might need a ramp into a building, and
somebody with a neurological disability that might need more understanding of their
ommunication style. Look at identifying those kinds of
barriers, looking and thinking about in much the same way we identify the physical
architectural barrier, what social architectural barriers exist in our society
that through working together with autistic people, our families, our other supporters,
professionals, what have you, we might be able to mitigate and to change it.
Would also work on looking at the specific things that cause people challenge:
Difficulty communicating, difficulty making friends, and so on.
And identifying services, supports and interventions, broadly defined.
I think the most practical of these are those relating to social services and social
interventions. If people manage to come up with, you
know, medical intervention that doesn't have horrific side effects and is actually useful
and effective, I am open to having people consider it.
I don't think it's terribly likely. But look at interventions, services,
support and education that directly relate to supporting people with those particular
challenges and getting people where they want to go in society.
And I think at the core of it, what that society looks like is one that is really
defined by the goals of the Americans with Disabilities Act, which I think I mentioned
earlier. And that is, people with disabilities
have a right to quality of opportunity, full participation, independent living and to
whatever degree possible, economic self-sufficiency.
Nobody wants to have others define who we should be, who you should be, whether or
not you as an individual and everything about you is right or wrong and what should be done
on your behalf. What the neurodiversity movement and
self-advocacy movement aspires to do is afford autistic adults essentially the same
rights and goals of any other group of people with disabilities, or any other minority group.
Thank you very much.
I am looking forward to your questions and comments.
APPLAUSE