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
…

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 …

Loud Hands Launch Video:

http://www.youtube.com/watch?v=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.…

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.…

—–

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 …

Tony Attwood has rarely been a good proponent of Autistic adults being in relationships with his giving credence to the “Cassandra Phenomenon”. Or by his distinctive choice to not leave the FAAAS advisory board. Or many of the other things that have been said about us in relationships.

However, in the link that was shared today on my Facebook stream, Attwood has done something that damages not just Autistic adults in relationships, but in parent roles, especially the men among us.

Oo-oh. Yes, Al.
(question by Al was whether children could exhibit AS if their parents are AS, but not have AS themselves.)
You’re spot on there.

Um.. Asperger’s Syndrome is infectious. The more you live with or work with Aspie people, the more Aspie you become. *chuckles*
So… to a certain extent in the family, it’s a survival mechanism of the neurotypicals. ’cause quite often the Asperger’s characteristics, especially in a father, can be the dominant force in the family. And sometimes you have to fall into line and you have to adopt the same pattern of less social life, rigidities, and those sorts of things to survive. Now, what we find is, though, that when the children go and visit other families with their friends, um, they say, “Wow. This family is totally different. There is a different atmosphere. There is a very different routine. I feel quite comfortable here.”

That is something I did in my childhood, um, I would visit other families and my mother would say “Anthony, you’ll wear your welcome.” And I didn’t know because I wanted to be in a normal family.

So, um, in some ways, I think what you have is someone who can be different and true to their neurotypical self at school and, um, at other people’s homes. But when they go into the Aspie household, they almost put the Aspie mask on to succeed in that environment.

So we talk about those with Asperger’s Syndrome faking it in a way and putting on a mask. Then the children in that environment may also do the same to be able to create an atmosphere at home of cohesion to accommodate the Aspie characteristics. So very interesting question.

I’m sure that I don’t need to add anything here, but I will anyways. The idea that it’s a survival skill for children of Autistic parents to “act Aspie” is a poor characterization at best. Children will undoubtedly pick up characeterstics from their parents by nature. However, using the term SURVIVAL SKILL means that they cannot survive without picking up those characteristics.

Not to mention, it’s quite possible to have many of those characteristics innate in the child of an Autistic parent due solely on genetics. It works in reverse as well, or else you wouldn’t have Broad Autism Phenotype for parents who exhibit some traits …

——————-

Call for Papers for a Special Issue of Narrative Inquiry in Bioethics: Narrative Symposium: Parenting Children with Autism Spectrum Disorders During the Transition to Adulthood

Narrative Inquiry in Bioethics

A Journal of Qualitative Research

Edited by Kelly Dineen, JD, RN & Margaret Bultas, PhD, RN, CPNPPC

Narrative Inquiry in Bioethics will publish an issue devoted to personal stories of parenting children with Autism Spectrum Disorders (ASDs) during the transition to adulthood. The stories should give readers a sense of what parents find rewarding as well as challenging during this time. Stories about any aspect of the transition are welcome, ranging from navigating the health system to romantic relationships. We want your true, personal stories in a form that is interesting and easy to read. In writing your story, you might want to think about:

• How did available supports or services change during the transition period to adulthood?
• Do you think the transition to adulthood has been affected by your child’s level of functioning or other health problems?
• What do you or your child disclose to others about their disability?
• What advice would you give to parents of younger children with ASDs about the transition?
• Did you obtain formal decision making authority (e.g. guardianship, conservatorship, power of attorney) for your child when they turned 18? Why or why not?
• What are the most surprising issues you encounter now?
• What do you think is important to share with others about the transition to adulthood for individuals with ASDs and their parents?

You do not need to address these questions-write on the issues that you think are most important to share with others. You do not need to be a writer, just tell your story in your own words. We plan to publish 10 to 12 brief stories (800 – 2000 words) on this topic. Additional stories may be published as online‐only supplemental material. We also publish two commentary articles that discuss the stories in the journal.

If you are interested in submitting a story, we ask you first to submit a 300‐word proposal-a short description of the story you want to tell. Please include a statement about 1) your relationship to your child or children (mother, father, other parenting role), 2) your child’s diagnosis (e.g. PDD‐NOS, Autism, Asperger Disorder), 3) the age of your child now and the age at diagnosis or treatment for symptoms, 4) the main issues you propose to address.

Inquiries or proposals should be sent to the editorial office via email: narrativebioethics@gmail.com.

We will give preference to story proposals received by Jan …

1. I am thankful for my family. My husband and kids are a large part of my life. If not for them, I don’t know where I’d be today, but I’m sure it would be dark and nasty.
2. I am thankful for my job. I love being able to help people and inform people from behind my little laptop. I’m happy that I’m able to work for such an awesome organization. I’m happy that I am useful to someone other than my family. The feeling is amazing considering how long it’s taken me to find my career.
3. I am thankful that we have a home and cars and most of our worldly possessions. I know I complain about this apartment sometimes, but it beats most of the alternatives.
4. I am thankful that  you all let me into your lives whenever I decide to post. I know I don’t have nearly the time I used to have, but you are all always here to give me a boost and say a kind word. So I am thankful that you are all such wonderful people.

——-

This is a conglomeration of thought based on several things I have read and conversations I’ve had recently, and quite honestly, for the past few years. Kassiane‘s blog post was repeated on TPGA and speaks about self-advocacy and autonomy even at a young age. Laurent Mottron’s commentary in Nature has been widely circulated with a quote from Dr. Mottron stating

As a clinician, I also know all too well that autism is a disability that can make daily activities difficult. One out of ten autistics cannot speak, nine out of ten have no regular job and four out of five autistic adults are still dependent on their parents. Most face the harsh consequences of living in a world that has not been constructed around their priorities and interests.

**bold emphasis is my addition

A recent conversation with a person discussing ASANs Navigating College handbook lead to talking about how to get something similar going for parents to help their child be more independent in preparation for transition. Then there are my continual lingering thoughts about nonPariel, which in my opinion is nothing more than a day hab, sheltered workshop with plans to include an onsite group home/institution for those considered by those who created it to be “high functioning.” If you’re wondering what all of these have in common, prepare to be enlightened.

First I will start with the statistics that Dr. Mottron said. 80% of all Autistic people are still dependent on their parents. I’m sad to say, I’ve got anecdotal evidence of the same.

Then on to nonPareil which was created by parents who were worried about their children’s futures. They don’t expect them to have hopes for independence so started a program directed to where they will be at transition age.

Next is the discussion about a guide for parents to help create independence. So many parents realize their 17 yr old is about to be 18, and adult and they scamper to find what they can do to help their child. This is a discussion I’ve had with more than one person over several years.

Last is Kassiane’s blog post about showing autonomy to a young boy 9-10 yrs old. How he was never shown that, which is not that uncommon.

I worked for a company into this April where preteens and teens with “HFA and AS” got together for social activities twice a month. So many times, parents said their children couldn’t be trusted to help cook. One boy even hit himself in the face when he was upset with himself and people let him use that it was a part of his condition.

What is this all getting to? Are you a parent that is helping your child be independent or are you standing in their way? If your child is in middle or high school, are they allowed to make mistakes like their peers are? If …

What I have lived in the year since then has shown me something new. Resilience.

After a car accident that’s left me crawled up in bed for days… after a move into an apartment… after failed attempts to keep my boys in ‘their’ school… after joining the employed ranks at ASAN… I have continued to drive forward.

For those that know me, it’s pretty plain to see that I’m completely overwhelmed, overworked and over-extended. To those who just take a glance, I appear together, thriving and tenacious. The truth is, I’m both. I must be both. I have a drive and need to be the together, thriving tenacious person, but it will always leave me overwhelmed, overworked and over-extended.

Those who see me as the together don’t question what I’m doing it all for. Those who see me over-extended don’t question what I’m doing it all for. There is a future for us all, but only if people DO over-extend themselves. My therapist says it’s because I’m a Type-A personality, that I have unrealistic expectations of myself. And she is completely correct.

But I ask those who do doubt why someone like me, who really cannot “handle it” all, who needs to take 30 minutes of break time for every 10 minutes of work, would continue to persevere. Why would I have these unrealistic expectations for myself and for humanity as a whole? Because if I don’t, I’m bound to sell myself short. And you would be bound to sell me short. And then my children would be bound to a life of never dreaming and never rising above.

I do it for me, those like me and for those who will come after. Because if I won’t do it, who will? The person that can handle it? That only teaches the disabled and Autistics that they can never or will rise above.

This past year, I have seen many struggles… But I have also seen that I can get through them, with a lot of support… with a lot of effort… and some very high, unreachable expectations.…