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.

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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.

In 2 min, Tony Attwood gave more credit to the idea that we should not have kids… should not work beside “normal” populations… and called us infectious. 

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 but are not Autistic themselves.

Also to note, a lot of children crave to be at others home not because of having an abnormal household, but due to the fact that it is something different from their norm. My dad was an alcoholic, so I often preferred to be at someone else’s home. HOWEVER, the same can be said of friends of mine, my brother and sister who lived in typical households and came over to ours.

And while my quote from above can be taken in many different directions, and not even necessarily to how it was used, the fact remains that Mr. Attwood chose to use that statement and others to suggest that our “behaviors” rub off on others.

I can think of other ways that this is damaging, but I’d be able to go on for hours if I were to post all of them. Please feel free to comment. (And always remember, I reserve the right not to post your comments if I feel they are inflammatory due to this being a safe environment for those of us who live with these fallacies daily.)

***If you catch a mistake in my transcription, I do apologize, just let me know!

The following is a Call for Papers, as the title says. However, I am not calling on any parent to submit a proposal. I’m specifically asking that Autistic parents of Autistic teens or adults think about submitting a proposal. If you feel you need help submitting a proposal, please let me know and I’ll be happy to either help you myself or connect you with someone who would be willing to help you.

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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 2nd, 2012.

For more information about the journal Narrative Inquiry in Bioethics, the guidelines for authors, and privacy policies, visit our webpage with Johns Hopkins University Press at:

http://www.press.jhu.edu/journals/narrative_inquiry_in_bioethics/guidelines.html

Every issue of Narrative Inquiry in Bioethics will be available electronically to over 1,000 institutional subscribers via ProjectMUSE.