Last weekend, I attended my first conference in over two years. It was the Blogher Conference in New York City where I met up with fellow autism-mom bloggers. I remarked on how I noticed the positive attitudes towards autism among parents that wasn’t so prominent a few years ago.
In response, I got a comment stating that I should attend Autreat. Well, I had in 2007. Back in my earlier days, because the climate among parent communities was so negative, I sought out autistic individuals who shaped my view of autism and assisted Adam and I on our journey. I thought instead of having people sort through 800 pages of archived Joy of Autism blog (on the right margin), I’d dig this up. It’s a copy and paste job, so I apologize in advance if the formatting appears off. No matter how I tried to fix it, it just kept reverting into a mess.
I called this post:
Are We Listening?
The audience waved their hands in the air – the deaf sign for waving. There were others who
rocked back and forth, some other adults who gracefully flapped their hands. Drake sat in
the front and squealed in acknowledgment when the speaker said, “just because you
don’t cry, doesn’t mean you are not sad,” in acknowledgment to how many autistics take time to
process their emotions. The squeal was a “yes yes!” to the speaker’s comments, and in any other
setting, this highly intelligent, non verbal autistic eleven-year-old may have been
asked to leave, or others might have stared, thinking that he didn’t
think of anything at all. Yet Drake kept doing this. He sat longer
than any other eleven-year-old I’ve ever met and made his noises
in acknowledgment of the important points.
“I am fortified by being here,” he wrote on his Lightwriter, a keyboard with a small
screen that speaks for him after he types his sentence.
I sat in the room and wished Adam was with me, his soft fiveyear-
old hair brushing my jaw, snuggling up to me as he always
does, and then taking breaks to jump up and down. Yet, I felt
comforted in knowing that he would be there next year, and the
year after that. I felt comforted that all of these people are him
years from now, and how privileged I felt that they were paving
the way, for it is a tough way, like swimming up a rapid flowing
stream.
It is rare to sit in a room with so many other autistic people, some
walking back and forth in the lunch room humming to themselves
in a heightened perhaps even ecstatic state, where I can only
imagine in other less accepting settings, would be frowned upon.
When I came to squeeze into the small space where this young
man hummed to deposit my lunch tray, he politely moved away to
make room for me, extremely aware despite the fact that some people
might believe otherwise.
When I saw him next time in the leisure area, he was asking others
to play a board game with him. Other autistic kids were hanging
out together, and sprawled themselves out on couches in front of
the TV, not unlike other teenagers. Around the grounds, people
wore badges that indicated if they wanted to talk, if they would
only talk to people they knew, or if they did not wish to talk at all.
There were many times I wanted to flip my own badge that
indicated the latter – as I am a person who likes to absorb and
observe, yet have been taught to socialize and be diplomatic and
suffer from a compulsion to keep that impression going. Although
it’s a skill I’ve acquired, I still find it exhausting. I wished that
those badges existed at the many functions I have attended,
where most people pretend to be something that they’re not, or
interested in things that others say that they actually have no
interest in at all. I consider all the wasted time I’ve had to spend
doing “small talk.” and all the time I spend in explaining life as we
know it to people who don’t have the time to understand.
The heat was oppressive this time of year. Yet, we were shaded by
trees. My hair unkempt and my skin moist from the humidity, I
unraveled. I could do what I needed to, to think. We were free to
lie down during lectures, or roll up and be comfortable on the
otherwise uncomfortable frayed wool couches — remnants from
the 1970’s. No lights were on in the summer heat, the hardworking
garbled hum of old air conditioners tilting precariously in
the windows of the lecture room.
The atmosphere was as honest as the discussions were. We tried
to figure out how to manage all the issues confronting autistic
people today, how to give another message to parents that there
are more options than they are aware of – because they don’t hear
it when all they hear about is ABA (in Canada specifically). The
atmosphere was welcoming, where fear and confrontation were
strangely absent. Strange because it is a sad reality of autism
politics these days – where some non autistic people never get
exposed to disabled people to hear the real views and issues. It
was strange as it was relieving. This was autism, and it was
comfortable. I didn’t have to be appropriate, I could say when I
had to leave without a guilty fuss. No one will judge me here. And
no one will be judged.
It’s called Autreat. It’s a place I’ve never felt or experienced
before, and I will want Adam to come again so he too can be
fortified. Adam’s fortification is what’s tantamount here, as I try to
raise him so that he knows who he is with autism, amidst a world
that doesn’t understand it or explains it inappropriately. It is
important that he understand himself as not a defect, but as a
person. It is why we as parents cannot accept misery rhetoric,
because no matter what level of “functioning” (that term means
nothing as it has no bearing on either intelligence or awareness), no
autistic child should have to grow up in an inhospitable
environment that threatens their self-worth. Inhospitable and
unsafe environments are those in which we seek to normalize and
reward normal responses to tasks where the autistic response is
never acknowledged, rewarded or accepted, thus valued. By never
rewarding an autistic person for being autistic, we threaten their
self-esteem and identity. Most will grow up being confused
because every well-intentioned therapist was so “nice” to them.
We have to train our therapists and clinicians to understand
autism – because most of them currently do not. They do not yet
understand how an autistic person learns. They turn to
operationalized methods that all seek at this time to make the child
not autistic, without valuing the autism. DRI and RDI are also
designed to “create a mind,” or have a child “play normally” to
which the autistic audience gasped in disgust. What are those
“gurus” implying? That the autistic people who could sit and listen,
and contribute, either verbally or in writing need to re-create their
minds in a fashion that suits the rest of the so-called “normal”
population?
I surmised that many parents are and are reluctant to give up
ABA becasue they may not understand that there ARE so many
options and so many opportunities to educate and for a great
quality of life. The latter is what hopefully unites us. What
disunites us is the definition of what that quality of life entails – a
life with or without autism. I seek the former because I have seen
that we can live a good life, thank you very much.
Quality of life is not determined by whether or not you drive a car,
but rather, what you make of your life, and your attitude. Autistic
people are capable, and how can we express to parents who only
see — particularly those whose children who are more profoundly
affected by the disabling aspects of autism – sensory issues,
anxiety, no spoken communication – that their children are there
and aware.
How can we express that the most important thing – our
children’s right – is to be who they are, but to provide AC
(augmentative communication) in the absence of speech, instead of
trying to force them to talk when they cannot.
How can we express that it is the teachers and clinicians who must
learn how an autistic person learns, and not expect a typical
response that can render an autistic person a robot. (All an autistic
person ends up learning is to respond the way the instructor wants
so that they can get the hell out of there).
How can we express the dangers of therapies that try to teach in a
way that is not natural – for our benefit so WE can feel satisfied
that the child has responded – that the child may in the future as a
result of such approaches, not understand who they are?
This is the most important aspect. Know who you are. Accept
your autistic child for who they are because this will allow
them to know themselves. Pave the way for acceptance and yes,
teach. But learn first. Learn how an autistic person learns and keep
trying to adapt until you find the method that clicks with your
child. That will constantly change.
Be a parent, not a therapist. Do not treat your child as a project,
but rather, treat them and raise them as a child. Model actions so
that a child can learn. Do not expect typical answers to “what is
this?” and other typical questions. Find out ways to pull out what
the autistic child does know. Do they know and answer better on
the computer? Then use that. Accept all forms of communication,
for they are valid and real. We are all obligated as parents to find
the AC that works best for our children. That is their right to have
over and above all those other therapies and monies wasted on
“behavioural therapies.”
Allow breaks for autistic children to re-focus. Truly seek to
understand their sensory needs. Do not offer artificial
reinforcements, like “good talking!.” They are fake and the child
will know it. Accept echolalia as sometimes the only language a
child can retrieve, particularly in moments when they are
overwhelmed, and then listen to what their body language and
faces are telling you.
Most parents want the best their our children. The difference is in
how we regard autism – a medical disease, which it is not, or a
disability with social implications, in other words, we have to deal
with the societal barriers that obstruct the opportunities for our
children. We cannot accept the latter. We must accept autism and
move on with the real barriers – the attitudes that will continue to
proliferate segregation.
We need to be advocating for inclusion in the school system and for
the accommodations that need to be made to acquire that. We
need to educate others as to the value of doing this – for all
children, not just the disabled ones – in cultivating sensitivity and
understanding. We need to teach our children how to advocate for
themselves – yes, even the non verbal ones. And for those who are
more profoundly affected by the more disabling aspects of autism,
we can seek the help of other autistic individuals to be mentors
and to advocate for the services that do not degrade and oppress
others.
The one thing we must do is to make other parents aware that
there are so many options about which they hear little or are
belittled by an ABA movement that continues to espouse
inaccurate facts about ABA under the guise of false scientific
“proof.”
We need to stop participating in genetic research studies which
determines only “prenatal risk” and threatens the existence of
autistic people. This research is done under the guise of providing
“better and earlier interventions,” which are non existent. What
babies need is love, support and engagement like any other baby.
The only purpose of this research is to determine genetic risk
factors. We do not hear about research that seeks to help autistic
people be the best autistic people they can be.
We need to redirect our attention to merging help (with the more
disabling aspects of autism) with respect (respecting the autistic
person’s right to exist) and realize that there is life beyond an
over-simplified “cure.” Further, helping the more disabling aspects
of autism (anxiety, sensory issues) can exist outside of a “cure” for
autism.
I urge every parent (but for those who visit this blog, I bet I’m
preaching to the choir), to actively seek out the alternatives and
become proactive in not accepting strategies that change your
child to “appear normal” because they will ultimately be very
damaging to their self-image as teenagers and adults, and we will
have greater problems to contend with later. There are options
outside of ABA which takes time from you to actively watch and
listen and respect your child.
Above all, as Anne Donnellan said in 1984, “make the least
dangerous assumptions” about your child. Or as Douglas Biklen
said, “presume competence.”
“The least dangerous assumption states that in the
absence of absolute evidence, it is essential to make the s
assumption that , if proven to be false, would be the least
dangerous to the individual.” (Zach Rosetti and Carol Tashie
from the Communicator, Autism National Committee Newsletter,
Inclusive Education edition.)
The constant banter that autistic or non verbal people who do not
look you in the eye are “not there” or “not aware,” or “cannot
speak for themselves” is an extremely dangerous assumption. All
people can speak for themselves in many different ways.
Are we listening?
PERM ALINK POSTED BY ESTEE KLAR-WOLFOND AT 6/29/2007 09:20:00 AM
23 COM M ENTS LINKS TO THIS POST