There is a nation in our world today that is
totally invisible… well, at least most of the time.
It is a non-political nation.
This nation often endures great poverty.
Its citizens are sometimes treated quite unfairly by those in
other nations. Until
recently, those who needed help in this nation weren’t allowed to save
money up for any big goals.
For many, their every move is watched, judged and others feel they
should be in complete control of these invisible citizens.
The nation has no name or geographical boundaries.
Many people who gave birth to these invisible citizens wish they
could create an island where this nation could reside in safety and with
the respect of other nations.
This nation has been called by several labels… Level 1 Autism…
Asperger Syndrome… High-Functioning Autism… even Uniquely Human.
I know about this nation, because my first-born child is a
citizen of that nation.
Many times in my life as the parent of someone with
“level 1 autism” or “Asperger Syndrome”, I’ve endured pain, frustration
and even embarrassment over the fact that my daughter’s truly
significant challenges and the behavior they sometimes instigate are
think or say things like, “Did you ever try spanking her as a child?”…
or “No one ever taught her manners.”… or “What a totally selfish and
rude person.” Nothing could
be further from the truth about her or about our parenting.
It took us six years to teach her how to wash her own hands.
She could not speak in the first
person until age 5, we socially rehearsed her before countless events
(yes, even before Carol Gray’s wonderful work).
Society is becoming better informed about autism
than ever before. However,
individuals on the autism spectrum are still envisioned as either highly
challenged or little geniuses just waiting to be discovered.
While challenge levels and strengths vary just as much as with
“typical” people, They seldom fit the common stereotypes.
When unexpected changes occur, those with autism are set
off-balance. Their anxiety levels skyrocket and their perceptions are
challenged from within.
This can result in a giant meltdown, a near panic urge to leave the
scene, rude behavior or utterances or a variety of truly unusual
If someone physically appears different, by
rocking, flapping their hands or walking with an odd gait, today’s
public would be likely to understand or have a modicum of sensitivity
toward that person. If the person were obviously visually impaired and
walking using a white cane with a red tip or using a guide dog, or if
the person was having seizures, or if the person used a wheelchair, a
walker or leg braces, the two same positive responses are likely to be
the reaction to odd behavior or words.
I believe that the general public is more inclined to kindness
than to cruelty.
Many parents of more advanced people on the autism
spectrum have said they wish their child had a physical indicator or
medic alert bracelet that would let people know their offspring have
autism. However, most of
the teens and adults I know who are on the spectrum do NOT want to be
singled out in any way. They want to “blend in” with typical peers or be
known for talents, not challenges.
Another huge acceptance challenge for these
individuals is that despite frequently normal or above intelligence and
a true desire to have and keep friends, they struggle to do so.
Often they appear totally self-absorbed and egotistical.
When one cannot take the perspective of others, their own
perspective is all they have. Some experts say that people on the autism
spectrum lack empathy. Here
is an eloquent rebuttal to that fact from a very intelligent man
“I keep reading that people on the [autism] spectrum lack empathy
and are unable to take others’ perspectives.
I think it might be more fair to say that we may lack certain
expressive and receptive communication skills, possibly including some
basic instincts that make communication a more natural process for
typical people. This,
combined with any cognitive or perceptual differences, means that people
with ASD do not share others’ perceptions.
‘Empathy’ is a nebulous term that is often used to mean
projection of one’s own feelings onto others.
It is therefore much more difficult to ‘empathize’ with someone
whose perceptions are very different.
But if empathy means being able to understand a perspective that
is different from one’s own, then it is not possible to determine how
much empathy is present without first having an adequate understanding
of each other.”
“But I do mind when in spite of so much effort, I still miss
cues, and someone who has much better inherent communication ability
than I, but who has not even taken a close enough look at my
perspective to notice the enormity of the chasm between us tells me
that my failure to understand is because I lack empathy.
If I know that I do not understand people and I devote all this
energy and effort to figuring out others, do I have more or less empathy
than people who not only do not understand me, but who do not even
notice that they don’t understand me?” (Quote from Jim Sinclair (ANI) in
More Cognitively Advanced Individuals, Susan Moreno.
Jessica Kingsley Publishers. 2010).
Along this line of logic, I don’t expect even my
closest friends to perfectly interpret my daughter’s words and actions
every time they stray from typical.
She makes just as many faux pas as others.
However, her ability to understand the impact of that error has
on others and to know when and how to apologize for it is not as good as
typical people. Therefore, when she tries hard to “fit in” and either
has a meltdown or acts oddly in front of others, few people tend to
understand that hours of stress trying to
keep up with the pace of typical life, has simply faltered for a
moment. Thus, judgments of
being intentionally rude or self-centered frequently result.
For people that are very high-functioning on the
autism spectrum, it must be like having to walk a tightrope every day.
I cannot imagine the stress that can create and the resulting
anxiety. It must be truly
exhausting at times.
My friends and family are kind and flexible about
these situations. I thank
them for that very much.
However, I worry about times when my daughter isn’t among friends.
I also worry about the invisible nation of people just like her
out there who struggle to keep friendships and jobs despite these
When those of you reading this come into contact
with a member of this “invisible nation”, never be afraid to ask
parents, caregivers or the person themselves (when calm) about possible
motivators for upsets. They
need and want your understanding.
However, they may not be able to ask for it.
Another problem is that, in an effort to understand
“autism from the inside,” people take the perceptions, opinions,
experiences and talents of one person with autism who may write a book
or give a presentation to be the same for ALL individuals on the autism
spectrum. While their
insights are highly valuable, we must remember they are individuals,
and thus are not a stereotype to apply to all.