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I am autistic
okay, that may be a “duH” thing to write as a
headline but it seems many of my Facebook friends fail to remember that. I
don’t know how. I exhibit many of the symptoms. It seems to be that it is
because I type well.
Here is the DSM-V diagnostic criteria on
severity and levels. I know I should be shot for using an Autism Speaks source
but they were the top search engine return that fit my need!
Okay, so based on this new criteria, here is how I
was recently re-labeled. (recently as in days ago). I use excerpts from the
cited website above and from my doctor’s notes on his findings. (I always get a
page by page copy of my medical records to keep on hand. They have come in
handy, in particular for cases such as this evaluation.
“Persistent deficits in social communication and
social interaction across multiple contexts, as manifested by the following,
currently or by history:
Deficits in social-emotional reciprocity, ranging,
for example, from abnormal social approach and failure of normal back-and-forth
conversation; to reduced sharing of interests, emotions, or affect; to failure
to initiate or respond to social interactions.”
From my doctor’s notes: ” Ms. Johnson shows deficits in
social-emotional reciprocity. She fails in social approach (based on documented
medical records from birth to present day) and failure of back and forth
conversation. She often stares in a state that makes her look like she’s
daydreaming while someone is talking with her, including this physician during
our interviews. She reports that she “zones out” when trying to converse with
others after her interest in what that person has to say wanes. Ms. Johnson
does seem to have improved in recent years in her desire to initiate and
respond to social interactions but has not been able to follow through except
in online contexts.”
”Deficits in nonverbal communicative
behaviors used for social interaction, ranging, for example, from poorly
integrated verbal and nonverbal communication; to abnormalities in eye contact
and body language or deficits in understanding and use of gestures; to a total
lack of facial expressions and nonverbal communication.”
From my doctor’s notes: “Ms. Johnson has deficits noted in her medical records which were provided to this physician and covered from birth to present day. She does not consistently and successfully use nonverbal communicative behaviors in social interaction. As observed by this physician, she presents with a total lack of facial expressions at times and does not seem to understand nonverbal communications used in many contexts. She probably succeeds more in her online social interactions because nonverbal communication is not used in that form. She makes minimal eye contact with others, as observed by this physician, and often uses a coping skill of looking at a person’s nose rather than their eyes.”
“Deficits in developing, maintaining, and
understanding relationships, ranging, for example, from difficulties adjusting
behavior to suit various social contexts; to difficulties in sharing
imaginative play or in making friends; to absence of interest in peers.”
From my doctor’s notes: “Ms. Johnson is an adult at present
and some of the observations come from her previous medical records and some
from this physician’s personal observation. Ms. Johnson states she can only
recall two incidents where she initiated “making friends” with another person.
A first grade teacher provided a report to a military physician in 1984 that
Ms. Johnson, as a seven year old, “does not seem to play well with others and
prefers to play alone or alongside her classmates. This is not developmentally
where she should be.” Ms. Johnson stated that she lost contact with her sister
for 10 years and only realized she missed this sister when she came into
contact with her again online last year. Ms. Johnson further stated that she
has always felt “if my friends were out of sight, they were out of mind” and
she does not actively seek to stay engage in her relationships. She waits for
her friends to call her or message her on Facebook, a social media website. The
only exception seems to be her biological father.”
“Restricted, repetitive patterns of behavior,
interests, or activities, as manifested by at least two of the following,
currently or by history
Stereotyped or repetitive motor movements, use of
objects, or speech” and
“Insistence on sameness, inflexible adherence to
routines, or ritualized patterns or verbal nonverbal behavior"
From my doctor’s notes: “Ms. Johnson does present with
repetitive motor movements also known as “stimming”. She moves her hands in a
manner that could be described as “flapping” or “trying to clap with one hand
only” while waving the arms around. Ms. Johnson does carry a co-occuring
diagnosis of Obsessive Compulsive Disorder and therefore also shows repetitive
patterns of behavior, interests and activities as a part of that condition. It
is unclear which diagnosis is the cause of that behavior at present. Nor is it
clear at present which disorder causes the inflexible adherence to routines and
ritualized patterns. For instance, she does things so that they are done an
even number of times, often repeating phrases so that a phrase is said an even
number of times. She once refused to sit in an office when it had three chairs
instead of an even number of chairs.“
"Highly restricted, fixated interests that are
abnormal in intensity or focus”
From my doctor’s notes: “Ms. Johnson has a varied
amount of interests and states that she “collects” interests to obsess about.
However, this physician has noted that her interests are abnormal in intensity
and focus both from observation and in documented history. Ms. Johnson reports
that she “cycles” through her interests. She will spend days or weeks focused
on one interest and then move to the next and so on until she is back into the
original interest. This method of cycling is part of a ritualized behavior as
she starts with the same interest and moves to the next interest in the same
pattern each time.”
“Hyper- or hyporeactivity to sensory input or
unusual interests in sensory aspects of the environment”
From my doctor’s notes: “Ms. Johnson has both
observed and documented in history of hyper and hyporeactivity to various
sensory input. She has exhibited a high pain tolerance in documented history.
There is documentation that she has failed to wear weather-appropriate clothing
when allowed to dress herself as a child. She reports that presently she often
leaves the house without a coat even during winter months. Again, with her OCD
diagnosis, it is difficult to distinguish the behaviors between autism and the
OCD. She reports that she routinely spends time sniffing the air while taking a
tour of her home, to check for smells of something burning. She often touches
the walls as well to make sure they are not hot. Ms. Johnson does exhibit an
unusual fascination with visual stimulation. She has documented history of poor
visualization skills and this may account for her fascination.”
“Severity
is based on social communication impairments and restricted, repetitive
patterns of behavior “
“Level 3Requiring very substantial support"
Severe deficits in verbal and nonverbal social
communication skills cause severe impairments in functioning, very limited
initiation of social interactions, and minimal response to social overtures
from others
Inflexibility of behavior, extreme difficulty coping
with change, or other restricted/repetitive behaviors markedly interfere with
functioning in all spheres. Great distress/difficulty changing focus or
action.”
From my doctor’s notes: “While Ms. Johnson is able to
verbalize her communication, it does appear to come at a cost to her. As
the first hour-long interview came to a close, Ms. Johnson appeared more tired
and less aware of surroundings than when first started. She was confused and
was unable to navigate her way back to the exit on her own and required
assistance in finding her way. Ms. Johnson reported on the second interview
that she found it hard to “function at all” after the first interview was
conducted and she returned home. When functioning does become difficult, she
prefers to go to her bed and retreat from the world around her. Ms. Johnson
receives daily care from up to three caretakers in a given day. It is this
physician’s belief that if Ms. Johnson did not receive such substantial support
as she does from caretakers, friends and family members, she would
ultimately be institutionalized or at the minimal, in an assisted living
facility or group home. She is unable to act on a prescribed budget and make
sure her expenses are paid in a timely fashion, she is unable to remember to
eat on her own, or to take in liquids. She is unable to leave the house on her
own much of the time, requiring an escort. Ms. Johnson has many physical,
biological, and neurological conditions that contribute to her depressed
functional abilities; however, it is this physician’s opinion, based on
observation, interviews with patient and others, documented history, documented
testing and results, that Ms. Johnson should carry the diagnosis of Autism
Spectrum Disorder, specifically, Level 3.”
So, what does this mean? Well, it means, dear
concerned parent of a child with autism, I am not “high functioning autistic”.
Not that I find it to be an insult, mind you. There’s nothing wrong with being
labeled as such, despite what some of these parents seem to think. It means I
am more like your ‘severely autistic’ child than you think. In fact, I bet your
child and I carry the same diagnosis.
I want to take this moment to also point out how
unfair you are to your child. I am now 37 years old. How old is your child?
Five? Three? And you want to compare his current functioning level to mine?? I
have had YEARS of maturing and growing and learning.. decades! Our arc of
maturity may be longer than a neurotypical person’s but that by no means should
suggest we ever STOP.
I work with my sons’ therapist all the time. When
he notices we are attempting to teach one of my son’s a skill that I have yet
to acquire, I teach myself first and then my child. Much like a parent who
doesn’t “get math” will first try to understand his or her child’s homework
assignment and then assist that child with a problem. So, I am always
improving. Always adapting. So will your child. Please, though, stop comparing
your children to the autistic adults you come across.
Please, stop accusing us of being “high
functioning’ as a way to mean that we’re not “as autistic” as your children
are. Please, stop believing that even if we are not as severely autistic as
your child is, that we do not know some of the things your child experiences or
that you cannot learn from us.
Oh, don’t get me wrong. There are some autistic
adults that are as “bad” as these parents I’m currently talking to. It’s okay
to say that parenting a child on the spectrum is HARD. Why? Because parenting a
child, period, is hard. I don’t know any different though as both my sons have
a form of autism. However, I recently adopted a 17 year old male who does not
have autism. And in the 3 weeks he has lived in our home, he has become a
member of this family, and I treat him like I do any of my sons. Just because
he’s neurotypical doesn’t mean he’s any harder to deal with than my other
children. I love them equally. :D
Seriously tho, folks. Stop it. Just stop it. Stop
assuming you know my severity level because I can type 108 wpm, on average,
sustained over a five minute timed test.
As my father pointed out yesterday… I may have
much knowledge gained from memorizing books but it doesn’t mean I can apply it
effectively. Just because I can type doesn’t mean I can talk. Just because I
can type, doesn’t mean I don’t also wear adults diapers (because I do). Just
because I can type, doesn’t mean I’m able to, on my own, pay my bills on the
day they due (not because of lack of money but because of lack of thought).
Just because I can type, doesn’t mean I can get organized and clean my house on
my own. Just because I can type, doesn’t mean I don’t have executive function
issues. Just because I can type, doesn’t mean that my autism is any less
pervasive than your child’s autism. Just because I can type, doesn’t mean I
don’t have challenges that come with autism. I have overcome many of them and
some I overcome daily in order to interact with you. Why? Because I do care
about your children. I care about my own children. I want their world to be a
more accepting and less judgmental place when they grow up and enter it.
