Someone posted this on my Facebook page:
Figure I –
ASPERGERS Acrostic Meme
A bunch of autistic people, people with autism, parents of
autistic people and parents of people with autism (bear with me on these
labels, just tryna make everyone happy!) responded.
At some point, early on, someone in my extended family
commented as follows:
ummm.. Well I know it's uncool to
say it, but those things apply on a LOT of levels to many people, even those
not on the spectrum. Aren't we all on the spectrum to some degree? I mean that
is what a spectrum is, from the smallest degree to the most challenged. We all
fall on there somewhere.
Then, perhaps fearing the Wrath of the Autism Spectrum, that
person removed the above comment before anyone had a chance to respond.
But I thought it might be a good inroad for an important and
necessary conversation. So I saved it and thought about it and here’s my
answer:
Short Version:
…Yes!
And…No!
Long Version:
Yes, by all means, I hope people DO feel included – in
general and in this here Full Spectrum! I want neurotypical people and
non-neurotypical people and everybody in-between to relate to each other with
empathy and compassion. I hope very much that people relate their own “endless
talking” or “rigidity” or “giftedness” to those qualities in others, and
therefore become more open and accepting. I think that’s the kind part of the
intention in this comment.
Finding out about Asperger's syndrome (now officially known
as an autism spectrum disorder) through having a son with that diagnosis has certainly
helped me with my own lifelong struggles with a different neurology (diagnosed only
later in life). Based on what people have told me, this blog speaks to a
variety of individuals who relate to our experiences, not just vis-Ã -vis autism
but attachment disorders and family stuff and “human being” as well. In terms
of specific differences, readers have told me they’ve recognized
attachment-disordered traits in family members and themselves and that our
experiences have helped them deal better; same for autism…
As for the actual person who made this comment, I would say
that we are related and we share a lot of neurology. Many of these above traits,
like being “sensitive to criticism” or having an “advanced vocabulary,” do run in
families -- whether from culture or genetics or both.
Besides, things like a tendency to be “easily distressed”
and being “socially challenged” are not restricted to people on the autism
spectrum and their families. Nor are being “gifted” or “remiss” &c traits
of only people in the special autism spectrum disorder/Asperger’s association.
BUT!
[Names of commenters on this post] and I, indeed all of us
who are on the autism spectrum and/or are raising children who are, experience moderate
to severe social challenges and neurological differences that affect all of our
lives in significant ways. Some of us don’t just “relate” to the traits on this
list, we are defined by them, especially
by others – and most especially by the neurotypical world.
Much as we hope
to
help our children/ourselves accept
and/or transcend disability and/or
celebrate their/our unique qualities
and/or
work toward a culture where neuro-
and other diversity is a given and all neurologies and disabilities and
differences are
VALUED
RESPECTED and
TAKEN INTO
ACCOUNT,
our children (and sometimes we ourselves) experience
challenges (and sometimes need services and accommodations) that most others,
quite simply, don't.
We’ve had to fight hard for our kids and ourselves, at times
just to hold steady at “okay” or “barely okay.” We’ve got IEPs,* 504s,*
behavioral plans, stacks of test results…Most of us have daunting piles of
(mostly unread) books on the trajectory from Sensory Processing Disorder
onward…Sometimes we have to get babysitters for our teenagers (if we can afford
it – my average is twice yearly).
We have to wade through mountains of labels and advice from
specialists and experts, and consider (or not! [and then we have to deflect!])
“cures” directed – mostly well-meaningly – at ourselves, our parenting, our
differences, our children, our families…
We frequently get asked to participate in unwanted meetings
-- and then we have to wrangle for the meetings we do want.
We get called in to school when our kid is quacking in
assembly; when the teacher wants to meet with our child’s class without our
child present to explain why s/he is not “weird” but “different;” called in
because our kid is ‘agitated” over a challenge a neurotypical kid would not
even notice, such as a change in routine…
Do these things sound familiar? If not, then you and/or your
child probably do not have autism or, for that matter, some other “special
need.” I am not trying to say those on the spectrum are members of some exclusive club, I am trying to be clear on what is what:
Having autism/being autistic is NOT something everyone
shares. There is an autism spectrum, and there is a spectrum that leads, in
spectrum fashion, up to that spectrum, but it is not the same.
The same might be said of an attachment disorder spectrum.
My other, non-autism-spectrum-y child does not have a Severe
attachment disorder, wherein people are unable to form meaningful connections
with others. On the attachment disorder spectrum, she falls on what’s known as
the Mild to Moderate attachment disorder
section, where attachments are possible but often fraught. Healthily-attached
children without attachment disorders may share some traits that are deeply
familiar to parents of children with attachment disorders (such as controlling
behavior or hoarding), but that does not mean they have the clinically defined
condition known as an attachment disorder! (More on this below…)
All behaviors occur in populations to varying degrees and in
a myriad of combinations. When an individual is found to be “out of the ‘norm’”
– by the schools and/or parent(s) or guardian(s) -- they usually get evaluated and labeled and their differences
may then be addressed within that paradigm. This process alone can be deeply
grueling.
It may also sometimes be rewarding, at least insofar as it
may offer insights for interacting, processing, succeeding in a neurotypical
(and/or relatively healthily-attached, and/or typically-abled) world. With that
in mind, Full Spectrum Mama investigates daily life with a bunch of people who
happen to embody some useful labels -- but are more than just these labels! --
in hopes of offering something worthwhile shining out of our Full Spectrum.
Respect for neurodiversity is a key theme for the Full
Spectrum Project -- and I believe that’s a piece of where my erstwhile
commentator was coming from, as well as the intent of the above acrostic.
One of the greatest things to come out of the neurodiverty
movement(s) is this idea that the ideas and thought patterns of divergent
neurologies may be equally valid and in some cases superior. Before, we
might’ve been inclined to dismiss ourselves. Now, we are gradually coming to value
different perspectives more – even if the wider world has a ways to go to catch
up.
Divergent neurology is, apparently, becoming more and more
common -- and as such one hopes it will be less and less marginalized, less
often dismissed as “remiss.” I hope, though, that increasing acceptance and
diversity never amount to attempted homogeneity!
I’ve always been openly against moral relativism – the idea
that all moral views deserve equal respect and are equally valid - on this blog
and as a longtime professor of ethics. But I do espouse “neural relativism:” the idea that all neurologies
are worthy of respect and consideration. This is not to imply that
they are all the same: commonalities do
not necessarily mean shared identity, status or diagnosis. To suggest that they
do, as my dear commentator seemed to be doing – however briefly – might seem to
trivialize the very real struggles many of us face.
Here’s an example: if you have received a diagnosis of an
autism spectrum disorder, you know that your neural processes are “not normal.”
What does this mean, exactly? For many, it has historically meant reduced
self-trust, a devaluation of one’s “wrong” thinking. This is changing. Today, many of us contend that knowing your thought processes, sensory processing and
reactions might be different from the mainstream is useful information, but it
doesn’t mean we should thus dismiss our concerns and conclusions based on that
divergence!
The mainstream certainly keeps things somewhat on track, but
it has also brought us witch hunts, slavery, centuries of marriage inequality,
Britney Spears, Monsanto, “Black Friday,” the 1%, dodgeball, Flamin’ Hot
Cheetos …
Knowledge is power. A self-evident and over-quoted phrase?
Maybe to you (or maybe not!). Until I began to learn about my son’s and my
non-typical neurology, until I began to address certain needs (such as sensory
breaks) as needs, NOT preferences, I
spent a lot of time feeling as if I was an alien being assaulted by humans and
environments (tangent: animals were my salvation). Migraines were (and are) a
major factor in life. Other people’s’ brains and actions were so opaque to me
that I tended to doubt myself and give others credence when I should not have
and thereby made myself vulnerable to exploitation, an experience many of my
spectrum-y friends share. The incidence of exploitation and abuse is anecdotally
higher among those on the autism spectrum. I do think and hope that this
terrible pattern is changing with increased knowledge and awareness.
Learning about the neurodiverse brain has shown me, finally,
how to set boundaries and how to trust in myself, and to teach my children to
do the same. I hope G is learning these skills in time to spare him much
suffering. I hope it can make him feel less alienated, less “socially
challenged,” more connected.
Having a daughter who exhibits the mirror opposite of the
“typically ‘autistic’” traits exhibited by my son (and, in many cases, by me)
has given me a lot to chew on in this idea of connection. Learning about
attachment disorders has also shown us how to set boundaries for Z and build
her self-confidence and trust -- in us and in herself.
In short, we’ve seen how the tools affiliated with certain
labels and diagnoses may be effective (or, plenty of times, not) in a wide
range of contexts.
In this conversation about commonalities, meaning and
context also play a huge role vis-Ã -vis
appropriate tools, labels and analyses. When a healthily-attached child of four
has a massive, age-appropriate tantrum, that’s healthy; when an eight year old
with an attachment disorder does the same, it is an expression of a deeper
pain. Or: when a healthily-attached child tests their evolving independence by
being defiant, their parent may well view that behavior as natural and
appropriate; whereas when a child with an attachment disorder acts defiant, it
is typically because they feel unsafe and out of control inside – and
untrusting. The latter child needs – in order to build trust, heal and feel
safe – a very different response than does the former.
Therapeutic parenting, as defined by the therapist we have
worked with, can look very different than your basic permissive vs. strict
parenting spectrum. In my experience, therapeutic parenting of this flavor is
not always looked upon kindly, particularly by the progressive parenting
population. So, parents of children with attachment disorders may live with
another difference that is challenging -- and that too may feel trivialized by
those who try to say we are all the same.
To summarize, I’m first aiming to make clear distinctions
within connection. Second, out of that clarity, I celebrate the incredible,
perhaps more-broadly applicable, helpfulness of the tools we have been blessed
to glean from learning about aspects of
the labels that represent elements of
the human beings in our family. Sometimes these tools are about healing and,
yes, “curing” an attachment disorder; sometimes they are about understanding
and creating space for divergent neurologies. They are always about growing in
inclusion and peace. The whole Full Spectrum household has become happier now
that we have these tools.
If reading about autism or attachment disorders or whatever (identifying with theASPERGERS acrostic, for
example) helps you in some way, more power to you! Our journey in this wacky,
divergent, polarizing, unifying enterprise was what got me started on this blog
in the first place, because Full Spectrum Mama embraces connection
within difference.
Learning more about autism has not convinced me that everyone
has Asperger's or spectrum-y tendencies at all. In fact, I wish that were so, as
children are not always particularly nice with those who are "different."
G's differences from the general population are more than clear (along with his
many wonderful qualities!!). He's faced far greater challenges socially and in general
than the average kid, as I know the aforementioned facebook-commenting parents'
children have.
Guess you could say I am not a parenting relativist either.
I have personal, direct, experiential knowledge that parenting a child who has
common sense and a reasonable level of social skills -- a child who I know with
100% certainty will be completely fine on his/her own as an adult -- is 37 bajillion times easier/less
worrisome that parenting one who doesn’t share these life skills, though I
wouldn’t trade or change the latter child for all the world.
Anyway, it’s not a contest. Of course all children and parents
and people have challenges. The challenges of autism per se, though, are not really
expressed by the fact that, sure, many people might share some of the qualities
on this ASPERGERS acrostic list. At the same time, we want to be really
careful to be sensitive around trumpeting the “difficulties” of autism in a
time when fear-mongering around the “autism epidemic” is rampant.
This list is just a tool, I think, meant for people with asperger's syndrome and those who love 'em or want to to understand more about it. I can’t speak to
the artist’s intention, but I can say with some confidence that s/he probably
intended the list for a specifically asperger's-related purpose.
That being said, the whole point at Full Spectrum Mama – as
I hope I have made clear, er…somewhat at length, herein - is the
connections between all of us. FSM engages the idea that we are all on a giant
spectrum and that therefore the similarities and differences between us can be
instructive - and funny. It entertains the idea that my two children, as PART
of who they are, seem often to be truly on opposite areas of that giant
spectrum. It explores these two vastly contrasting yet sometimes surprisingly
connected areas of a Full Spectrum that happen to be known as autism and
attachment disorder.
My intention is to be illuminative of one unique mix, to be
inclusive, to describe our spectrum, where the tools that work for us might
have a higher chance of working for others for the very fact that they are
working (or not working, puh-lease!) for
spectrum locations that seem poles apart. My daughter is not on the autism
spectrum, my son is not on the attachment disorder spectrum, but they are both
– as are we all – on the inclusive, colorful, beautiful FULL Spectrum.
When I started writing/drawing Full Spectrum Mama almost two
years ago, I envisioned the Full Spectrum as a Line. Then it became a Circle.
Now it’s time for a Globe!
Voilà – the Globular Spectro-Continuum!
Figure II – The
“3-D” Globular Spectro-Continuum
Figure III – The
Globular Spectro-Continuum: Cross-Section
Welcome.
Love,
Full Spectrum Mama
IEP:
The Individualized Educational Plan
(IEP) is a plan or program developed to ensure that a child who has a
disability identified under the law and is attending an elementary or secondary
educational institution receives specialized instruction and related services.
504 Plan:
The 504 Plan is a plan developed to
ensure that a child who has a disability identified under the law and is
attending an elementary or secondary educational institution receives
accommodations that will ensure their academic success and access to the
learning environment.
