Monday, July 28, 2014

I am autistic

We Are Like Your Child is pleased to host a guest post from Heather E. Johnson today!  Heather blogs at And here are my words...

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.

Well, I don’t recall that being listed as a thing when the changes were being made.
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.