Labels.

13 Dec

Staying Dry.

Originally uploaded by CleverGirlBek

Here is Alex…It was raining hard when he came home from school. He wanted to play out on our lanai. I talked him through finding a towel and how he would use it to dry his feet when they got wet on the lanai.

So he put the towel down on the wet lanai and shuffled around outside with his feet tucked into it. He got soaked. The towel? Soaked.

I realize now that I didn’t walk him through and show him: where to put the towel, the precise sequence of events from putting the towel down as a mat, through every detailed movement of his spontaneous play outside, and eventually over to the mat, nice and warm inside the house, to dry his feet.

Because that’s what he needs. Precision. He is intensely rule based and fairly non-flexible.

But he’s wonderful.

But I’m exhausted.

Anyway.

What I want to talk about today is labels.

Alex has a label now. It’s not a precise label, it’s very broad for now, but we now have a label. For us a label is a tool, it is for communication and for research to find the help we need to help him have a happy and healthy life.

So here is my assignment for you. Close your eyes and think what either of the following word means to you. Embrace your interpretation. Then scroll down. (If you would like to, you may anonymously share your initial thoughts in the comments area….don’t worry you will not be judged…I went through this…I’m still going through this….)

Autism.

Ok. Here is the DSM IV (from NIH)/Diagnostic Criteria for Autism and Asperger’s…. Please read them carefully…

Diagnostic Criteria for 299.00 Autistic Disorder

1. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
1. qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
4. lack of social or emotional reciprocity
2. qualitative impairments in communication as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor manners (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects

2. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
3. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.

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Diagnostic Criteria for 299.80 Asperger’s Disorder

1. Qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity
2. Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects
3. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
4. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
5. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
6. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

Looking at the criteria, has your view on what Autism means changed?

I know mine did.

If you are a parent with a kid with PDD of any type- what was your crash course like? What has your experience been with other people understanding even the basics of autism and what it means?
With the amount of Autism news everywhere, I’m amazed that the news outlets virtually never cover the criteria. I get that the human interest story is the child who has the most symptoms and the most impairment, or the greatest non-autism hardship that affects their autism, or their family’s ability to provide for them and their special needs. i really do understand that… But the focus completely on the human interest side, and the lack of an explanation of what autism is, without delving into severity, is doing a great disservice to many children. My dad insists that nobody thinks that autism is really bad parenting and lack of discipline. Then again, he doesn’t read the comments after articles online and he has never been to Target and experienced the full-on Alex fallout because the kid can’t handle the lights and sounds. He has never been there when an old man informs me that “a good beating” would fix Alex because that’s what worked on his kids… And this isn’t just one experience. It is many. Those people are out there. I am grateful that I can express the why to the judgmental butt-inski’s of the world with one word.

And I am reminded (and I have to find the source of the quote) of the mom on a message board that said, to the “well meaning” stranger, “If a kid had cancer would you try to spank it out of him?”

Many people see autism in two ways, there’s the “all autism looks like Rainman. If the kid isn’t acting like Rainman, it’s clearly a discipline problem.” (by the way, you can read about Kim Peek, who was the inspiration for Rainman, on Wikipedia http://en.wikipedia.org/wiki/Kim_Peek)…

And there are the people who see it as purely a discipline problem. (and people like Dennis Leary. I will not get into that at this time.)

And then there are the people who live with it every single second of every single day, be it their own or their child’s or their patients (does not apply to all doctors…we have found that out…We are just learning, yet by reading the basics we seem to know more than some of the physicians)…

So when I use a label to explain something my kid does, please don’t assume or treat us like we are:
1. Trying to restrict our child’s success in life.
Pretending this doesn’t exist is cruel and more restrictive than a true label.

2. Looking for a problem.
We are not looking for a problem. It is there. This didn’t happen overnight. We have known our child for almost 5.5 years. Frankly, we are greater experts in Alex than anyone reading this. We, with the help of family, friends, and a few undereducated professionals, gave the benefit of the doubt too many times. That has delayed helping him in such a dramatic way that has made his treatment more complicated, exhausted all of us, and worse, it has damaged his self-esteem.

3. Restricting him from enjoying life.
We are working hard with Alex so that he may enjoy life, understand it, and not be so scared of things like moderate to loud sounds and the lights at the grocery store. We do not restrict him from anything. Alex requires extra effort from us to keep him safe, due to various issues. This is not us being paranoid. It is us being responsible and keeping our child alive. When he was a preemie, someone with a cold could have infected him and killed him. Now that he is 5, the safety issues are different, but he requires the same vigilance. He falls down and gets hurt (frequently. the child is blessed with my physical grace.), he gets sick from playing with the kid with the snotty river drying on his face at school. We want Alex to have the ability to make good choices for himself in life, so he can experience more and give more to the world. Keeping him alive and giving him the tools he needs to even just have a back and forth conversation are important parts of this. We are not restricting him, we are helping him explore his world. If you need further description, what may appear as restriction to an outsider (anyone who doesn’t live with this every day) is actually comparable to providing a wheelchair bound person with a ramp. We are giving Alex his ramp.

4. Bad parents.
We take this parenting thing very seriously and because of Alex’s needs, we also do work harder at parenting and learning to be better parents, than many folks (not all by any means, and everyone has their *thing*) who have an average or neurotypical kid who just needs the basics (love, food, basic health care, clothing, and a roof over their head). We also have to be teachers, occupational therapists, physical therapists, speech therapists, detectives, physicians, psychologists, behavioral specialists, nutritionists, project managers, and schedule everything with the precision of a railway scheduler/conductor.
So before you judge us to be bad parents, or suggest we “just love him”, know what you are judging and in most cases, know that you have only read the brochure about this land we inhabit, you have never been there or even seen the extensive slide show or even checked Amazon to see if there is a Fodor’s or Lonely Planet guide for our world.

Anyway, enough of my babble. I guess I just want everyone to listen before they judge. (and yes, I have both complete strangers and someone close to me in mind when writing this)…. Learn before you preach.

I also find that the people who lecture on labels and applying them to anyone, are people who have never had anything in their lives that are worthy of a label. Most people who have a label (and to clarify I’m not talking about labels thrown around in name calling and derogatory fashion…I’m talking about labels to describe a fact.) understand how necessary and helpful they are….

Hugs all around…
B

(by the way, in case I didn’t mention it in my lengthy entry, Alex has PDD-an extremely broad label that contains Autism and other disorders….We are 99.9% sure he has Asperger’s… You can check out WrongPlanet.org for more info on Asperger’s…)

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2 Responses to “Labels.”

  1. jenniferastle December 13, 2008 at 2:25 pm #

    Hi there,
    I just wanted to let you know that I stumbled across your Etsy shop and fell in love with your designs. I write for an on-line zine called TrendHunter.com, and I decided to write an article about your stuff! If you want to check it out the link is; http://www.trendhunter.com/trends/clever-girl-industries-jewelry. Hope you enjoy!

    Happy Holidays,
    Jenn Astle

  2. Lady Bracknell's Editor December 13, 2008 at 5:15 pm #

    You know, I should put you in touch with my friend Marmite Boy.

    His partner’s daughter has Asperger’s.

    Personally, I know a few adults who have it, but not any children. I can’t begin to imagine how difficult it is to parent a child with Asperger’s, particularly given the impact on your energy-levels of your own complicated health issues.

    You rock. (Although no doubt in a permanently-exhausted way…)

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