I’m redoing, as is common if you’ve followed me over the years, the ASParenting website. I will be messing around with the insides to try and create what I’m wanting. As well, from the Facebook Autistic Parents group, I will be adding some extra parents on to update more regularly.
Things you will see changing in the coming days/weeks/month (hopefully no longer than that).
- I plan to create these two columns you see as one the on going blog with ASParenting only content, but with only segments/titles/something of that sort for anything but the two most recent pieces. The second column I’m going to attempt to create as an aggregate of other Autistic parents sites who update about their family as there are a lot more out there now than there used to be.
- I will be creating easily accessible links to Twitter, FB, G+ and our Yahoo Group at the top (so if you notice the three white curvy things, that’s where that will go).
- Hopefully, I can get better integration with FB working again as I know a lot of people found that useful.
- I will be closing up membership to anyone who is not a contributor.. This is just because of spam stuff. I’ve noticed getting a lot of sign ups in the past few months with odd email address. Since I do not require membership to add comments, I don’t see the point in having it there. If I ever decide that it’s better to utilize features of membership, I’ll re-examine this.
Please let me know if I need to add anything (I do plan on adding accessibility features) or if there’s anything you’d like to see.
There are re-occurring themes among the Autism/Autistic online worlds. The most current is, “You can’t understand because you’re high-functioning/have Asperger’s.” It comes and goes when parents of Autistic kids insult Autism because of their child’s difficulties.
I’ve wanted to rebut this several times and often do when getting into a comment exchange on other blogs.
- No. I am not like your kid because I’m an adult.
- No, I am not where I’m at because my parents helped me. I didn’t receive any Special Education or 504s or anything.
- Actually, when I went to college, this is where I found that I couldn’t even stand on my own two feet.
- I have had to have several years of therapy and medication, much thanks to my husband, to overcome my previous years.
- For YEARS, I couldn’t even do household chores from that much anxiety and stress that had built up.
- Yes, I do know what it’s like to have a child that doesn’t speak.
- Daniel didn’t speak until 4.5 yrs.
- Daniel’s speech is sometimes even now unintelligible by ME, and most of the time from those who do not interact with him on a daily basis.
- It can take Daniel up to 2 min to form a 6 word sentence. This is greatly down in the past year since getting his iPad.
- Yes, I know what it’s like to have a child that is still has to wear a pull-up.
- Despite being a 2E child, Stephen is not fully potty trained.
- I’m not sure he even feels it.
- He will be 7 in just over a month.
- Yes, I know what it’s like to have a child who elopes.
- The first week after we moved back to Texas, Daniel escaped from the house and walked to the grocery store around the corner.
- Daniel WILL run away from you and every other adult without paying attention to what’s in front of him.
- He has nearly been hit by a car several times.
- We now take precautions.
- No, just because I believe in Autism Acceptance doesn’t mean I refuse to get help for my kids.
- Both boys have IEPs.
- Both boys had early intervention.
- Both boys continued with OT, ST, and Daniel PT after aging out of EI.
- Daniel has had ABA to deal with dangerous behaviors.
- Stephen has had DIR/floortime to help with his imaginative play skills.
- No, we no longer do therapies outside the school directed by a professional. (I decided at some point, kids need to be kids, no matter their disability.)
- Yes, both of my children are on medications. One for ADHD, the other for sleep and calming issues.
- Yes, I do know what it’s like to not sleep at night because my child is awake all night.
- Yes, I know what it’s like to be AFRAID of my child because he’s become that violent.
- Yes, I know that all we want is what’s best for our kids.
- That does not mean I will chelate them.
- …cure them.
- …destroy their sense of self by removing all traces of Autism.
- …destroy their self-esteem by saying their reactions to things are wrong.
- …drug them to control their behaviors.
- Yes, I know what it feels like to watch my child bang his head so hard that he could cause permenant damage.
Here’s what I don’t know… I don’t know why this would make me hate Autism. I was so thankful to know what it was. What was causing my children not to speak. What was causing them distress and unrest. I was happy to know there was something I could do. That’s what the Autism label is to me. An answer to “what’s going on.”
What I do know is that there is no amount of hate of Autism that will make your child better. There is no amount of vitriol put into treating your child that will not radiate to your child. There is nothing you can say that I have not been through myself, with one of my children, or have seen one of my friends go through.
What you’re going through may have different manifestations. What you’re dealing with at this second may have so much stress attached to it that it seems like there’s no end in sight. But you can get through it. You can accept your child from where they’re at. And once you do that, you can truly start to help your child because you’re not going to be forcing a round hole through a square peg.
Applied Behavior Analysis, better known as ABA, receives a lot of opinions, most of which I disagree with. I continue to see people either raving or condemning it. I’m often asked to explain to people “What’s wrong with ABA?”
I’m going to say this once more and direct people to this blog post when asked again. You are free to do the same. There is nothing wrong with ABA. This is my personal opinion and does not necessarily reflect the views of any organization I am a part of, will be a part of, or have been a part of.
Does this mean I think ABA should be used on every Autistic? NO! Does this mean I think people who practice ABA (usually BCBAs and BCABAs) do no harm? NO! Does this mean I think ABA should never be used? NO!
Three examples:
Example 1: Daniel was around 4 when we started using ABA with him. His behavior? “Property destruction” was the formal label. The cause? He was either climbing to reach something or he was showing his disapproval for being told no. One day, when he was climbing, he knocked over a 250 lb TV and fell to the ground with it barely missing his leg. He did this again and barely missed crushing his body. To me, and any other person, this was a life threatening behavior. Other times, he’d clean off countertops in one swift arm motion which also caused bodily harm. These are not “acceptable” behavior in people’s minds.
We chose to use ABA because we did want this behavior modified as reasoning was not working. Logic was not working. Pre-empting him every second of the day was unachievable.
We did not use aversives. We only used rewards based on non-destructive behaviors. We successfully ended the behaviors. And then we stopped using ABA. If people disagree with what we did, that’s their own choice, but I did not want to hear from the bathroom a thud, a scream and then have to call an ambulance because my child had crushed his ribs or been punctured with glass.
Example 2: Judge Rotenberg Center is the best extreme for this example. As some of you may have learned. They use Electric Shock treatment to curb behaviors of their “patients.” They are not allowed to do this with new patients, thankfully. However, this form of aversive therapy is a most notable part of some ABA therapies. Using aversives during the course of the behavior is supposed to make the behaviors stop when coupled with rewards. I could go in depth with this, but I think most people can see how evil this is. It’s conditioning based on torture. Many of these acts we aren’t even allowed to perform on detainees!
Example 3: I watched a video at a parent meeting one night. A BCBA was trying to stop a behavior in an 8 yr old child. (This was open to the public, but I will not be using names.) The behavior? Over-excitement and flapping when first interacting with her friends. She sat with the girl and the girl’s two best friends. She explained the behavior that was “undesirable” and asked one friend of she liked it when the girl did this behavior. “No. I can’t stand it.” Asked the other friend, “Well, it’s not that bad.” The therapist asked “What if she did it everyday every time she saw you?” The little girl not knowing any better responded, “Well, no, I wouldn’t like that.”
Was this behavior hurting anyone? Honestly, no. One friend obviously didn’t show tolerance, but it wasn’t hurting her.
When asked about the consequences of being told that her behavior was wrong, the therapist didn’t seem to think there would/could be significant consequences. When pressed about the issue, the therapist said “Well, she’s going to have anxiety problems either way.”
When questioned about how this is appropriate to do when it’s not hurting anyone. It was just about being socially acceptable based on the parents’ opinions.
This is where the difference lies. I’ve been told, “Well, parents have that right.” Obviously, they do. They also seem to have the right to subject their children to dangerous chelation therapy. Or to put their child through HBOT which can cause oxygen poisoning.
To me, if we aren’t allowed to tell the parents what to do, surely, we should be able to ask BCBAs to be ETHICAL. Medical ethics say primum non nocere (Do no harm). BCBAs are not medical professionals. They don’t have to go to medical school. But they are paid as medical professionals very often by insurance.
There is nothing wrong with ABA. The problem is the lack of ETHICS within practitioners. They are not required Ethics as part of their training. There are no standards about how ABA is practiced by the BACB (Behavior Analysist Certification Board). The problem is not looking at the long term affects and what is actually harming their clients.
(It doesn’t hurt to also train the peers too if you’re talking social skills.)
BEFORE YOU READ ANYTHING ELSE:
Dr. Lord said that the study numbers are probably exaggerated because the research team relied on old data, collected by doctors who were not aware of what kinds of behaviors the proposed definition requires. “It’s not that the behaviors didn’t exist, but that they weren’t even asking about them — they wouldn’t show up at all in the data,” Dr. Lord said.
Last paragraph from the article below
***WARNING: LONG POST IS LONG. IF IT’S TL;DR, I UNDERSTAND. THE ABOVE IS THE MOST RELEVANT PART.***
Yesterday’s NYTimes article is definitely not the worst propaganda to come out about how we’re either overdiagnosing, or how DSM-V will kill kittens, or how it’s all about the money, but it seems to have created the largest response I’ve seen yet.
I want to paint you some pretty pictures to illustrate why Volkmar’s “data” from his “study” (link not to the “study,” but where it’s referred to as a study)that no one has read nor has it been published nor is it going to be published.
(SOPA and PIPA supporters: I do not have permission to reproduce this photo so I’ve kept the link to where I got it rather than putting it on my own server.)
Hey look! We have some apples.
Red Delicious (Autism), Granny Smiths (Asperger’s), Yellow Apples (PDD-NOS), and Others (Rett’s and CDD)
Data:
Red Delicious Apples are: Red, Have a Peel, Have a stem, Has several seeds at core.
Granny Smith Apples are: Green, Have a Peel, Have a stem.
Yellow Apples are: Red and Yellow, Have a Peel, Have a stem.
(I can’t tell you data used has not been released.)
Diagnostic criteria match the above.
Diagnostic criteria change.
To be an apple:
- You must have a peel and a stem. (You have to have communication challenges.)
- You must have seeds. (You must have social challenges.)
- You can either be tart, sweet, or somewhere in the middle. (You may have restrictive behaviors, interests or activities.)
Oh dear. It seems that Granny Smith Apples and Yellow Apples no longer meet the criteria to be called apples.
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I can’t confirm this as stated above because the data and the way it was utilized has not and will not be shown. Volkmar has said he will be doing a large sample later in the year, but that will result in different results because it’s not the same data points.
But let’s look at the discoveries made about Autism Spectrum Disorders in the past 2 decades (19 yrs to be honest). Heck, let’s look over the past decade. Did you know we can see signs of Autism sometimes as early as a year and a half? 10 yrs ago, most children weren’t diagnosed until 3-6 yrs old unless they showed multiple traits. At that point, we didn’t see traits in children diagnosed with AS until anywhere from 6-18+. Now I know parents who have had their kids diagnosed with AS at age 2-4! Why? Because we know even more about Autism, how it presents, and numerous traits that were considered “fringe” 20 yrs ago (Sensory integration, anyone?).
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Does that mean there aren’t things wrong with DSM-V? I don’t know. I like what it has become. I agree with multiple people that it doesn’t show all of our traits, but I don’t think that kills the criteria. Have you seen the criteria, btw? That was a lot of the big scare yesterday.. Apparently a lot of people were trying to access the DSM-V page because it took me over half an hour to even get to the home page, let alone the ASD page. Take the currently listed criteria:
A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
D. Symptoms together limit and impair everyday functioning.
I can see some people complaining about D, but don’t really care about that as I do believe that ASDs are disabilities. I know some people are worried about going back to the late diagnosis that A will lead to, which I think is more than appropriate. I know adults are worried that because of their ability to mask means they can’t get a diagnosis, but that’s not really a *new* problem.
Like I said on a list today:
It’s no different than teaching an Autistic child to mask. Does that
mean they’ve lost their diagnosis? (I know, that’s a question most
parents will argue.) The only difference is that I wasn’t taught by a
behaviorist, OT, SLP or other professionals.
Except, when it’s taught by professionals, it’s usually called “coping strategies” or “intervention.” But as said, this is a current problem.. And I think it has to do more with professionals not understanding adults can learn coping skills and sometimes there is not going to be any data to prove that they originally didn’t have those skills. These are what I call BAD PROFESSIONALS. Of COURSE an adult doesn’t present like a child, because, they aren’t a child!
Basically, THE SCARE IS OVER NOTHING. The release sent out by GRASP even shows how it’s important to look at ALL the details. (Ya know, like that the current criteria listed was listed January 26, 2011… and we’re currently in 2012… and we haven’t even hit January 26 yet.) I know not all the details are available, but I think that’s due to the fact that Volkmar is INTENTIONALLY using scare tactics. It’s not like his views on the subject of removing Asperger’s aren’t clear.
Once upon a time, there was a girl who despite all her abilities could not make sense of the people around her. She was hopelessly lost until she made the one friend who stood by her side from grade school through high school. When they parted, the girl, now a young woman, was hopelessly lost again.
She went to college, but she failed to do daily things, like eat, or laundry, and even most of the time homework. She suffered a lot, from stress that caused great migraines and bouts of sleeping. She met people she finally understood, but by that point it was too late and there was little she could do to regain her stepping.
She found herself pregnant, homeless and in a bad relationship. She gave up on finding her footing and moved back with her parents who were also hopelessly lost.
She met a man half the country away. This man fell in love with this now pregnant young woman who had failed in her relationship, in her studies and generally at life. He woo’d her, despite the fact that she didn’t know he did. And when all else failed, told her of his love for her.
After meeting for the first time, in person, only weeks before this young woman gave birth to her son, they both knew they wanted to see if they could have a life together. That man moved half a country away to be with this woman and her son. But soon he lost his own way, unable to find work, he decided to move back home, and so risking all, the woman moved back with him.
Now nearly 8 years later, this mother to two, this Autistic person, knows that sometimes in life you must risk things to gain so much more. But that does not mean things have been easy.
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This week, my husband and I celebrate our 7th wedding anniversary. If it weren’t for him, I doubt I would have ever found my way. And I thank him deeply for all he has done for me and our children.
) We have long needed a way to show what and who the Autistic community is. To define who we are. Loud Hands is meant to be just that. Not only that, but a way of introduction for those who come after. I’m extremely excited and I look forward to what’s to come.