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).

1. 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.
2. 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).
3. Hopefully, I can get better integration with FB working again as I know a lot of people found that useful.
4. 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.

Fun facts going in, in case you’ve never read my blog before.

1. I identify as Autistic and have been diagnosed with Asperger’s Syndrome.
2. I have two children who are cute, adorable, and thankfully, Autistic.
3. I work for the Autistic Self Advocacy Network, but the views I express on this blog are my own!

Kathryn Bjornstad-Kelly’s post on the (awesomely new) ASAN website today for AAM is right.  Awareness is not enough.

Reasons why AWARENESS is not enough for me?

Growing up, I was not diagnosed. I did not become diagnosed until my children were. So the “suck it up” attitude is what I usually got.. or the “Watch your P’s and Q’s” line… I was taught that speaking my mind was wrong. That children were seen and not heard.. That women were subservient to men.. That it is NOT ok to be noncompliant (even if your finger is broken and swelling much larger than it’s supposed to be). I learned that the only way to escape home was to work work work. And the only way to survive at home was also to work work work. And to never let the food get cold. And that even if you speak up, the most you will get is a lot of sympathy but no action.

And so I drove myself to meet these demands. I drove myself from as far back as I can remember to do all my work.. To do extra activities.. To do the cooking and cleaning. And to never complain. And to never break down…

Until…

One day, I did. I broke down. I broke down for a year. A solid year that I don’t recall a lot of what happened. My medical records clearly show, but actual memory is not there. And how long did it take me to recover from this one year where my body and mind said NO MORE!? 10. Ten years it took.

I’m finally back to where I was before the breakdown. And much wiser.

However, when my kids were diagnosed, do you know what I saw?

I saw parents and professionals talk about awareness. I saw them also talk about how to get your child to make eye contact.. and how to make your child stop flapping and spinning.. and how to make sure your child isn’t rude to others.. and how to make sure they were indistinguishable from their peers.. and how the only way to truly make them better is to rob them of their childhood by doing therapies before school, after school, on the weekends.

I say NO! I say no because I know where that leads.. and I’d rather these children not be told that they aren’t good enough.. and that they need to stop being the way they are.. Because in the end, what is going to happen to them? I don’t want my kids to lose 10+ years of their life just because they aren’t allowed to flap their hands, or spin in an empty room or on the grass, or speak up when they can’t do something any longer!

Autism Acceptance is about accepting those things that make each of us different. It doesn’t mean to not nurture and help in the areas that are difficult. It just means that after you become aware of Autism, that you become accepting of the good, the bad and the really disgustingly ugly.. and instead of trying to hide it all, you take the person that’s there and try to make them an even better by strengthening what is there.

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.

1. No. I am not like your kid because I’m an adult.
2. No, I am not where I’m at because my parents helped me. I didn’t receive any Special Education or 504s or anything.
1. Actually, when I went to college, this is where I found that I couldn’t even stand on my own two feet.
2. I have had to have several years of therapy and medication, much thanks to my husband, to overcome my previous years.
3. For YEARS, I couldn’t even do household chores from that much anxiety and stress that had built up.
3. Yes, I do know what it’s like to have a child that doesn’t speak.
1. Daniel didn’t speak until 4.5 yrs.
2. 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.
3. 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.
4. Yes, I know what it’s like to have a child that is still has to wear a pull-up.
1. Despite being a 2E child, Stephen is not fully potty trained.
2. I’m not sure he even feels it.
3. He will be 7 in just over a month.
5. Yes, I know what it’s like to have a child who elopes.
1. The first week after we moved back to Texas, Daniel escaped from the house and walked to the grocery store around the corner.
2. Daniel WILL run away from you and every other adult without paying attention to what’s in front of him.
3. He has nearly been hit by a car several times.
4. We now take precautions.
6. No, just because I believe in Autism Acceptance doesn’t mean I refuse to get help for my kids.
1. Both boys have IEPs.
2. Both boys had early intervention.
3. Both boys continued with OT, ST, and Daniel PT after aging out of EI.
4. Daniel has had ABA to deal with dangerous behaviors.
5. Stephen has had DIR/floortime to help with his imaginative play skills.
6. 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.)
7. Yes, both of my children are on medications. One for ADHD, the other for sleep and calming issues.
7. Yes, I do know what it’s like to not sleep at night because my child is awake all night.
8. Yes, I know what it’s like to be AFRAID of my child because he’s become that violent.
9. Yes, I know that all we want is what’s best for our kids.
1. That does not mean I will chelate them.
2. …cure them.
3. …destroy their sense of self by removing all traces of Autism.
4. …destroy their self-esteem by saying their reactions to things are wrong.
5. …drug them to control their behaviors.
10. 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.

Two pieces of information you need to know before reading this post:

1. I am moving to Maryland to take a full-time job at the ASAN DC office.
2. I have created a Facebook Group for other Autistic parents. (If you want in, send me an invite. You MUST be on the Spectrum and you MUST have children or be pregnant/have a pregnant S.O.)

I have been reading a lot of posts from other Autistic parents and feel right at home talking with all of them. It’s amazing. A lot of other people have felt these same feelings and expressed them in the group. It has given me a slightly new take on what all I can and should be posting on this blog. That is where this post is coming from.

So as I said, I am moving to Maryland… in 2 days time… for a full-time job with ASAN. The apartment is nearly empty. We have already had our one mishap happen (our uBox cube at Uhaul was broken into. Insurance is covering it. We didn’t lose anything that’s not replaceable that we’re aware of yet). We have a crap-ton of clothes, two cars, kids and other misc things that we are driving from Texas to Maryland with… In TWO (2) days.

Stephen is anticipating it, and is excited. Daniel is anticipating it, and is apprehensive. James is anticipating it, and is slightly worried (still some to pack, some stuff to give away). I am …not anticipating it. It feels like nothing is about to change in a few days.

I was apprehensive and anxious about it last week and the week before that. I was excited about it two-three weeks ago. But right now? I feel like NOTHING is changing. I am unable to resolve this lack of emotion about the impending change. A good change! A great change! We are out of Fail School! We are going to be among the Autistic crowd! I am going to have an office.. with a window.. unlike that A$ lady… (inside joke for Lydia) I get to get up in the morning and GO MAKE A DIFFERENCE! How many people get to say that? (Lots, I know. In different fashions.)

And as I type all of this that I *know* I’m supposed to be excited about. And I’m typing in enthusiastic tone, I am not excited. I’m not anxious. I am just typing the way I know I have. My feelings are numb.

I feel this way when something is about to happen. I have with the past sets of plane trips I’ve had. I used to get that way in high school as well. I have all these feelings, then suddenly, nothing. Afterwards, I will have whatever the resolving feelings are. But I had hoped this time it would be different. It’s an amazing life ahead of me, some of which is full of mystery. And I’m feeling nothingness.

I wanted to share this as an autistic, a parent, a person. Because these sorts of things matter just as much to my parenting as how I choose to raise my kids. And perhaps this is a survival skill to not let my body overload that I’ve grown to have. But it definitely is something I think that makes me quite different than a lot of people.

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.)

Yesterday,  we were introduced to two new culprits of the greatest fallacy of a generation, Dr. Paul Steinburg and Benjamin Nugent. What is this great fallacy? That Asperger’s Syndrome is nothing more than a social disability that any quirky nerd can fit into. Afterall, every quirky nerd has difficulties in social interaction and usually a preoccupation in particular subject areas.

The fallacies continue to include that nonverbal Autistics are mentally retarded. That “Aspies” when put with “real Autistic” students have lowered self-esteem. That “real Autistics” fail to gain receptive and expressive speech. That no Autistic can have positive outcomes in life, be a police officer, learn to cope with their surroundings.

I wrote a letter to the editor and encourage you to do the same. I’m going to wait to post my letter until I’m certain that they are not going to post it, or after they post it. But I want to take a minute to dissect the Asperger’s fallacies. I think the others are pretty easily recognized as just evil, but the Asperger’s fallacies are what contributes to most of the problems in the new DSM 5 criteria and the general bias many feel to say Asperger’s isn’t really Autism.

1. A social disability is not a communication issue. In the Steinburg piece, he talks about communication issues like they are only expressive and receptive speech. I wonder if he’s aware that there are pragmatic and semantic language issues as well. Often, this is where we seem to lack. Even children who had no speech, but gained it and reproduce is ‘accurately’ tend to have pragmatic and semantic language issues. This is not something that’s an “Aspie only” trait.
2. A social disability is accurate enough for many “Aspies.” I’ve met many Autistics, especially women, who were diagnosed with a social disability. It’s commonly known as either Social Phobia or Social Anxiety Disorder. But to say that this diagnosis is encompassing of an Autistics difficulties, most of us will tell you is yet another fallacy.
3. “Aspies” don’t have any other traits in common with “real Autistics.” We apparently don’t have sensory issues (finally acknowledged in DSM-5), or motor deficits, or executive functioning issues (both lost in current diagnostic criteria). We apparently don’t stim like real Autistics. We apparently all have appropriate self help skills as well. We apparently have no problems with adaptive living skills.
4. Deficits in youth that don’t make it to adulthood means that I’m not really Autistic. In the Nugent piece, he talks about the fact that he used to speak oddly. But as he got into adulthood, he recognized the issues socially around this and stopped. One of my favorite sayings seems to fit well here. “Insanity is doing the same thing over and over again and expecting a different result.” Everyone learns from their mistakes. Everyone. To think that just because you learn to cope or learn traits or learn to not do something means that a diagnosis is inaccurate. That’s basically saying we should stop all interventions on Autistic children because they’ll never learn to cope or learn the right way to do something. Just because you self-taught rather than having a professional teach you how to do something doesn’t mean those symptoms never existed.

I can think of more, but think this is plenty for now. Feel free to continue the discussion about the other fallacies in either piece.. I’m not going to talk about the repercussions of these pieces as I believe it goes without saying that they are  both damaging.

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:

1. You must have a peel and a stem. (You have to have communication challenges.)
2. You must have seeds. (You must have social challenges.)
3. 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.

—-

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?).

—-

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.

If you haven’t heard of The Loud Hands Project, then I apologize for not telling you of this wonderful project that is part of the Autistic Self Advocacy Network‘s new programming for 2012.

Loud Hands Launch Video:

httpv://youtu.be/4iVektXsNRI

As you may notice, the IndiGoGo campaign has officially exceeded the goal. However, that does not mean that more support isn’t needed. The original goal was set to meet the cost of the Loud Hands Anthology (submission guidelines). That means the Anthology will be made! This is great, but Loud Hands was never meant to stop there.

Check out what your donations will do past this:

Benchmark 1: $15,000 “About us, without us”

 

“About us, without us” is a video about the Autistic community and our place in the conversation around eugenics and the prevention of autism. If we make the $15,000 benchmark, we’ll be able to pay for Julia to go on the road and collect interviews and footage, and cover production, editing, and initial distribution costs.

 

Benchmark 2: $20,000 “Welcome to the Autistic community”

 

• With these funds, we can rush website development and have the Loud Hands project website complete, fully accessible, and ready to launch on April 2, 2012–Autism Acceptance Day.
• Use the website to commence the development of materials tailored to all ages and abilities explaining autism and welcoming the autistic person to the community.
• Initially, this will take the form of a letter drive, blog carnival, and pamphlet-design competition, with ongoing further refinement and eventual publication of materials.

 

Benchmark 3: $25,000: Connecting to Community Together

 

To begin, we will produce a DVD incorporating video and written content from across the history of the Autistic community, establishing our historical context. Then, to explore the state of the movement today, we will use the funds raised to establish a Conference Scholarship fund for Autistic self-advocates to use to attend Autistic and disability rights related conferences and events connecting to the larger theme of disability culture. Scholarship recipients will participate in a second video documenting Autistic community and culture.

I’m rather excited about all of this. (And not just because I’m not responsible for any of it. ) 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.

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.

—-

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 are getting ready to move to the DC metro area in a couple of months. The move talk has been exciting and I will miss the people I have come to know in the Dallas/TX Autism community (even if we disagree on some/many things). But it’s thrown a whole new conundrum in my face it seems. And certain articles, stories and projects (of ASAN, such as The Loud Hands Project) have not helped me think of it any less (and in most cases more) This partially goes back to my earlier blog (Are You Standing in Their Way?), which if you’ve read my blog very often, know that’s very rare.

—–

What are we teaching Autistic kids, preteens, teens and young adults today?

1. Autistic people are very literal minded.

2. Autistic people see things in black-or-white.

The Attwood blog got a lot of response, some of which criticized me for being “too literal” and seeing things as too “black-or-white.” I get the impression most of these people did not read my commentary after the transcription (Thank you, nicocoer, for stating this fact.). If they had, most would see that I wasn’t upset at the PYSCHOLOGICAL and CULTURAL and SOCIOLOGICAL “phenomenon” that children pick up characteristics of those they were around, but how that notion was presented. So was I being literal when quoting “Asperger’s Syndrome is infectious”? No, but that doesn’t mean that rhetoric doesn’t *hurt* Autistic people, and in this particular case, Autistic parents.

As for black-and-white thinking, apparently you can’t think a notion of human conditioning, persay, is perfectly ok while thinking rhetoric to present it is wrong without being called a “black and white” thinker. Rhetoric says more than a message at times.

3. All Autistic people have sensory issues they need to work around.

The phrase here that’s a total myth is “work around.” Yes, all Autistic people have sensory issues, but sometimes we need to find a way to work THROUGH them. Around is an avoidance strategy that can work for some things and not for others.

Compare and contrast: 2009 piece on an Autistic couple and 2011 piece on an Autistic couple

Lindsey and Dave are awesome people (They also have a new NPR interview that’s not nearly as thorough as the 2009 piece.). I have yet to meet Kirsten, but have met Jack, and he seemed like a nice person. However, you can see the differences in their relationships and how they “cope.” I’m not going to get into the other issues with the 2011 piece, including the theory of mind and ableist actions of the ex-boyfriend.

However, you can see how both relationships seemingly “work.” Jack and Kirsten come from a younger generation of Autistics where they have been taught to avoid their sensory issues. Lindsey and Dave, from the slightly older generation, that work together to find solutions to their sensory issues.

As a married woman, I know my husband loves giving me light touch. I tolerate it because I know it makes him feel good. I let him know if it’s hurting any particular day (usually when I’m in overload/overwhelmed mode). I know my husband prefers noise around him, so if I cannot concentrate, I will go to a different room to do my work. At the same time, when I need it, he will take care of the kids for me to decompress and will give me deep pressure when I need it. These are work throughs, not work arounds of daily sensory challenges. (Feel free to say I’m nitpicking on the terminology.)

4. Autistic people have a hard time gaining and keeping friendships.

Maintaining friendships when you’re the only one working to do so is going to be difficult on anyone. Friendships are not friendships without give and take. Friendships are another type of relationship and is ignored in modern “social skills training.”

A lot of social skills training revolves around scripted exchanges. Sit in on a elementary group speech session.. Is it really that customary during a turn taking game for the next person to ask for the (example) dice each and every time it’s their turn? Is it really “normal” for the prior person to not give the dice until the question is asked?

When you see someone, anyone, do you always walk up and say “Hello ____. How are you today?” Would you do that every single time you saw that person? Does this help gain and maintain a relationship with that person?

In short: NO!

Yet, this is what social skills training works on (there are flavors that work on more like MGW’s Social Thinking and Jed Baker’s program). It doesn’t work on gaining or maintaining relationships.. It works on normalization of communication which is not the overall issue at hand. (BTW, I prefer Baker’s approach because it equally takes into the account the NT peers social skills as well as the ASD child’s skills. MGW is a good program if you have a good practitioner for people who struggle with reading emotions.)

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You bundle this together with parents who want their children in a segregated classroom. What you get is a self-fulfilling prophecy. You teach a child for so long that what they say is “wrong”, that they are black-and-white, literal thinkers, with “mindblindness”, what you are going to get are adults who cannot work in a typical environment and must be sequestered to maintain a job.. you’re going to get adults who cannot maintain relationships.. you’re going to get adults who believe so deeply in what they’ve been told that they cannot escape a literal, black-and-white, mindblind mindset.

We are dooming a whole generation to failure, in a sense, by perpetuating these “truths.” And so, I do fear for the next generation that will be going into adulthood because they are not being given the skills to get support and accommodation to meet their needs. They are being spoon-fed the lie that they will never work or live in the community, will never find love, and will have to rely on “the government” for their needs.