The neuro-diversity movement (NDM) probably wouldn’t refer
to me as one of their friends. Nevertheless, there are several things that I
appreciate and respect about them. I
often read their blogs. The posts I get the most out of are written by people
with autism that describe their sensory experiences. Many of us wish we could just get into our
children’s heads and experience what it feels like to be them, but that isn’t
an option. Reading the experiences of
other people with autism offers some insight.
Everyone is different, so I can never be sure, but often there is an
explanation that really rings true and helps me understand Naomi better. I also appreciate the posts that describe how
to work with people with autism in a way that is most effective and
respectful. I try to apply what I learn
from those too. It is far more helpful
than people telling me that Naomi is being belligerent, manipulative or “just
like that.” I think a number of the
therapies we use have been modified as a result of advocacy for greater
sensitivity and dignity when it comes to working with autistic people. I appreciate that!
On the whole, I think the NDM deserves a lot of credit for
increasing autism acceptance in our society.
“Acceptance,” can be defined differently depending on who you ask, but
for me, it means being open, welcoming and accommodating to children and adults in
all areas of our community – Our schools, our recreational facilities, our
stores, our churches and our neighborhoods, to name a few. It also means that when we make policy or
laws, we make them with people with autism in mind. We have got a long way to go with acceptance,
but we have also come a long way and I think the work of the NDM continues to
have a large impact.
The trouble I have with the NDM is the vilification of
anyone who expresses a wish for a cure or prevention of autism. I’ve heard this
phrase over and over. “You can’t love your child and not love his/her
autism.” Actually, you can. I don’t just say this with regard to myself
but with regard to thousands of parents that intensely love their children, and
would do just about anything to find a cure for autism. They watch helplessly as their children find
their bodies cause them to behave in ways they can’t control. They are told that they shouldn’t want a
cure for their children. They should
love them just as they are, as if they don’t love them already.
Autistic adults that want a cure, (yes there are some), are
told that they hate themselves or that they have been brainwashed by a society
that does not value them. They are most
certainly not welcome participants in the NDM and I've seen this extend into character attacks that the NMD would not tolerate if these attacks were aimed at one of their own. The ironic thing is that a
movement that believes in nuerodiversity does not allow for a diversity of
opinion. You either agree with us, or
you are anti-diversity. Hmmm.
The NDM tends to see autism not as a serious biological
disorder, but only problematic due to the discrimination and prejudice which
holds people with autism back. While
acceptance and accommodation are helpful, there are many people for whom that
is not enough to lead a fulfilling life.
Autism profoundly affects the sensory and nervous systems which cause a
whole host of symptoms including meltdowns and self-injurious behavior. This can cause people with autism to act out
in ways that is not a true reflection of who they are. Even when they get lots of acceptance and lots
of therapy, many are left unable to communicate effectively, form
relationships, self- advocate or live independently. For them, this is not a
civil rights issue. This is a medical issue.
On the bio-medical topic, you would swear, from reading
neuro-diversity blogs, people that want to take a bio-medical approach to
autism are STAMPEDEING toward chelation, bleach enemas and fetal
transfers. These treatments are
extremely rare and almost never used
without the guidance of a trained medical doctor. Bio-medical treatments are mainly just about diet
and vitamins. Most parents who look for
these treatments are not hell-bent on completely eradicating autism. They just want their children to be healthy so
autism is not a barrier to making their way in life.
The NDM tends to be really hard on parents. A
parent that publicly admits to being crushed after his/her child has been
diagnosed with autism, or jealous of families with neurotypical children, is viciously attacked and told he/she is a
bad parent. It seems that there are
parents that are afraid to say that autism has had a negative impact on the
family, for fear of being accused of not loving their child. They end up saying things like “It’s not the
autism. It’s the sleep deprivation, the
anxiety and the meltdowns.” Well , those
things go hand in hand with autism. It’s
good to know they are not bothered by stimming, lack of eye contact and
language delays, but that’s not all there is to it!
When an autistic person displays violent or aggressive behavior,
it seems that people from the NDM respond by saying that someone in the
environment –usually the parents- must have been doing something wrong. In every other context in the world this is
called ‘blaming the victim,’ or ‘justifying violence’. Parents that have been injured by their
children are berated for discussing it openly.
They are told doing so disrespects the dignity of the person with
autism. No other options? Suck it up.
It’s your fault for failing to control the triggers. The fact that, in many cases, triggers can be
extraordinarily difficult to figure out and even more difficult to constantly
control seems to be irrelevant. There is
almost never an expression of concern for a parent who was admitted to the
emergency room or lives in fear for their safety. Just
take the blows, take the blame and don’t you dare say anything negative about
autism! I don’t mean to indicate that
parents should not learn to effectively and respectfully work with their kids
nor should the autistic person be shamed in such a circumstance. Often the
violent behavior is self-inflicted and I can’t imagine how anguishing that can
be. At the same time, it is reasonable
to acknowledge that a condition that makes a person act out this way is
something much more serious than simply a different way of being.
When asked about seizures, anxiety, mood swings and OCD the
NDM point out that nuerotypical people have these conditions too. This
is true, but they are exponentially more common and unquestionably linked to
autism. It’s like diabetes link to
kidney problems, neuropathy and impaired vision. People without diabetes have these health
conditions too, but if you don’t have diabetes, you’ve got a much better chance
of avoiding them.
Sometimes the NDM
acknowledges that people with autism need therapy or need to be taught
things that come easily to neurotypical people. In my experience, however, they do not acknowledge that often therapy is
ineffective, or parents have spent countless amounts of time, money and energy
trying to teach a skill that is not being learned. The only answer is that the parent hasn’t
done enough, had the wrong attitude or chosen the wrong treatment. I believe that we, as parents have to keep
working and never give up, but can’t we
acknowledge that a neurological
condition that prevents people from acquiring basic skills is not as natural a
variation as hair color or shoe size? I
want to point out here that both Temple Grandin and John Elder Robison have
acknowledged that severely autistic traits are cause for serious concern. I appreciate that!
Finally, the advice for parents to help their children with
autism, can be taken to the extreme.
Here is one example. “You DO NOT
EVER restrain an autistic person who is having a meltdown, ever! “ Never?
I have seen an autistic child run toward a baby in the middle of a
meltdown. Was the mother just supposed to stand back and let him work it
out while hoping that the baby’s brain doesn’t hemorrhage? I know a woman who had her hair ripped out in
the middle of her child’s meltdown. Was she
supposed to figure that she could always wear a wig and wait for her hair to
grow back? I can understand that if at
all possible, restraining an autistic person in the middle of a meltdown should
be avoided, but never ever?
Here is another example from a blog post on stimming.
“Let me be extremely fucking clear: if you grab my hands, if
you grab the hands of a developmentally disabled person, if you teach quiet
hands, if you work on eliminating “autistic symptoms” and “self-stimulatory
behaviors,” if you take away our voice, if you…”
Now, I appreciate the idea that basic, harmless, stimming
behaviors shouldn’t be suppressed, but there are appropriate and inappropriate
stims. My daughter likes to stim on
zippers. I have bought her many zipper
style bracelets and even encourage her to stim on them, but sometimes she stims
on other peoples pants, including men that are complete strangers. Damn right I grab her hands! If I am a bad mother for grabbing her hands,
then what kind of mother would I be if I let her stim on some man’s fly? The overall principle expressed by the NDM is
not wrong. Let just not take it to
extremes!
There. Now I’ve
pissed of the anti-vaccine movement and I’ve pissed off the neuro-diversity
movement. Of course, I’ve outlined the
things that I admire about them too, but let’s face it. That’s not what anyone’s going to focus
on. I guess that’s why this blog is
anonymous.
