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.

Sorry to my Autistic audience… this post is meant for the non-autistic parents in my audience.

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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 your child is in elementary school, are your children allowed to make any of their own food?

Do your children have responsibilities that they must do? And how about entrusting them with money? If your child is young, does he have to put the dishes in the dishwasher? If your child is older, does he know how to do his own laundry?

These are all life skills that really build onto each other. So when I hear a parent has waited until their child is 15, 16, 17 to ask “What does my child need for transition?” I always think that the parent has already waited too long. When parents say their child can’t do something, I always ask why. If it’s maturity, then what are you doing to increase his/her maturity?

Like I’ve said before, we use ChorePad HD to help with all sorts of skills. But it doesn’t serve just as a reward system. There’s saving and practicing and growth to learn new things. Daniel, who most would think couldn’t grasp the delayed-reward system, does.

So why not try it with your child? Even if you don’t have an iPad, you can go pick up tickets at the dollar store (Dollar Tree has some). Like those older carnival style tickets. And you get to give tickets for things you want to praise, and remove (if your child is ready) for things that were harmful or disrespectful. It’s the same idea. They can save up to something large while still spending for small things, like 30 min on games/the computer. (A good way to recoup those tickets is adding a goal of “No protest getting off electronics which teaches another skill. And make sure you have a timer that they can read!)

If this sounds preachy, I apologize. But part of having a self-advocating, autonomous adult is allowing them to make their own mistakes, teaching them skills to increase their independence and allowing them to make their own decisions.

In case you can’t tell, the theme for today is “NEW”! You may recall that last year we moved out of my mom’s house and into an apartment. By doing so, we moved out of the old school’s boundary lines and into a new school’s boundary lines. These schools are literally less than 5 minutes apart distance wise. We looked hard for a house to rent in boundary lines. Nearly had two, but they fell through at the last moment. We were given a last hope that perhaps the boys could transfer into the old school, but found out only days before classes started that that would not be happening. So we prepared the boys to go to a new school.

Despite being 5 minutes apart, the schools are no more alike than an apple vs. an orange. Sure, they are both still public schools in the same district, but that’s where the similarities end. The first days left Daniel without an aide, left Stephen over-medicated and left me confused about what was going on due to lack of communication.

Daniel: Without an aide, because we were not explicit enough in his IEP. It says “Close Adult Supervision” at all times. It also says 1:1, 1:3 and 1:6 for most instruction time. But this did not translate together as “1:1 aide at all times”. This is where the lack of communication left me unable to know it was happening until his team lead said “We’re going to try to put an aide with him at the end of the day.”

Stephen: Over-medicated, because it’s a patch, it releases medication the same throughout the day, except when it’s hot. The new school doesn’t have the lovely new air conditioning system that the old school has (probably because the old one was only built ~13 yrs ago). So with 100+ temperatures each day since school started, it was warm inside the building. This means that his patch was releasing too much medication. It was what we call at home “Zombephen”. The teacher thought he was acting very well in class because he was staying in his seat and being quiet. Luckily I went in for lunch the first day and saw my Zombephen and now we know.

Me: Lack of communication is a huge problem. I’m not getting reports home for either boy. I’m barely able to tell whether or not they’ve eaten lunch. And I still don’t know if Daniel has a 1:1, though, I suspect he does as the same aide picks him up at the door in the morning and brings him out to me in the afternoon.

My solution: Parent-teacher conferences! I have one today at noon. I have one on Monday at 1. And Thursday I will be meeting with the teams as the boys have triennials this year. Hopefully all will be resolved through all of these. But until they are done, I really can’t say for certain. All I know is I rather hope that I don’t find out any majorly disappointing surprises.

Lots of things have brought about this post. It is a culmination of events over the past few years. When we moved to Dallas, I found most everyone was biomed. Those that weren’t became so. I love many of these people as people. They are kind, caring and supportive individuals.

I constantly hear, “you’re such an inspiration.” “You give me such hope for my child.” Or even, “Your son doesn’t look Autistic.” “Your kids are doing so great.” “It’s obvious you’re a great parent.” I like some of these, feel ambivalent to others and love the rest. And I hear these sorts of things directed to other Autistics.

I can’t say I understand all of what’s said. We are just people living our lives.

But what gets to me… and this comes from watching the awesome Loving Lampposts, the horrid Autism Now series on NewsHour, to knowing Wakefield is going to be in town next week, and finding out an Autism is Treatable segment will be on the news in the morning… How can we be inspirations? How can you hope your child turns out like us? Then in the next breath, when we give advice, “Well, that’s how you choose to do it. And we’ve made a different choice that works better for us.”

It isn’t like I’m talking about specific treatments. I’m just asking for you to learn your child. To accept your child. To build a relationship with your child on your child’s terms. Not yours, theirs.

Don’t call me an inspiration then ignore all advice I give…. especially when you ask how I did it… how I do it… and love the results you see.

When I speak of Autism, please know I love your support and understanding.

When I speak of my Autistic children, please know I understand them very well because I’ve been diagnosed myself.

When I speak of the current state of things, please know I am happy with my life and my children, but know there’s already room for improvement.

I love that you are interested in what is going on in my life. It’s been a long time since many of us have spoken. Our lives diverged and this little thing we call the internet has connected them once again. It seems we now have something in common. You may teach in a Special Education classroom. You may be a Speech, Occupational or Physical Therapist. Maybe you are just in education. Whatever  it is, it’s amazing to see how our worlds collide once again. But this time, we are not peers or relatives, we are on opposite sides of the same quest. To make life for those with Special Needs fulfilling, independent and happy.

This doesn’t mean we’re fighting against each other.

It means we have two unique perspectives.

Would you like to reconnect?

I know I can always use more friends, but what I know more is my children need more allies. More people who understand and accept them as they are. You once accepted me for who I was. Many of you even helped build me up. You supported me through school with your friendship and kindness and faith in me. You supported me when I had my ups and downs and I became the person I am today because you were around.

I’m here if you have any questions.

It’s like dueling banjos over at Change.org and on Twitter. On the one side, you have the National Autism Association sending out regular tweets and getting “their side” to sign their petition. Their petition states that adding the diagnosis of Wandering to the ICD-9-CM will mean more research into it, create better responses when it happens and so forth. On the other side, you have the Autistic Self-Advocacy Network sending out regular tweets and getting “their side” to sign their petition. Their petition states that adding the diagnosis of Wandering to the ICD-9-CM will mean higher likeliness of seclusion and restraint in the name of treatment, rights being stripped from Autistics, especially autistic adults, and so on.

Being a proud supporter of ASAN, as well as having a chapter, you can guess which side I support. While I have many real life friends that are members or part of NAA, this is yet another area that we will have to agree to disagree (as there are numerous other areas that we do so as well). But yesterday I read a blog where it questions our sincerity in caring for the “lower functioning” “less able” on the Spectrum. So here I want to make it clear that I personally VERY much care.

Daniel is a wanderer. We have thought in the past that we may have to get an Autism dog to help curb that, but so far we have not needed to. We put a double deadbolt lock on our front door. We have had him walk out the front door, around the corner, and into a grocery store. We have had him wander into traffic. Believe me when I say I CARE about anything that has to do with children that wander. It is something we have to prepare for everywhere we go, any place we live or visit. Because of our due diligence, we haven’t had him escape in over a year now.

At the same time, I find it DEEPLY disturbing that anyone would want to put the diagnostic label of wandering onto anyone. Wandering is not a diagnosis, it is a behavior. If it is approved, this would be the first time I’ve EVER seen an Autistic behavior listed as a DIAGNOSIS. If this Autistic behavior is listed as a diagnosis, are there any other Autistic behaviors that would be listed next? To me, that alone makes it not worth it to do.

As well, I do not see how it can possibly help first responders when there are other measures (Mason Alert anyone?) that do not require a new DIAGNOSIS to achieve the same effect. Research to me is a moot point as the reason for wandering is as varied as any other behavioral response. Daniel is a wanderer when he’s very upset. He’ll take off running when he’s flustered or frustrated. Other times he’ll stomp off and then open the door and walk out. It has happened. This is because he’s flustered or frustrated.

What can we do to help him not wander? Recognize when he gets flustered or frustrated, help him communicate how he’s feeling, and help him calm down. Other children, some do it because of an attraction to something. If they don’t have a way to communicate, then sometimes they will wander off. The long or short of it, giving someone the ability to communicate their needs, understand their feelings, and then giving them the tools to support their needs is what needs to happen. Do you need a separate diagnosis for that?

If it’s about getting GPS tracking for your child, what are you doing to PREVENT wandering? There are two key pieces to wandering prevention and response. The GPS device is not nearly enough without a good proactive prevention plan.

What happens to these children that then become adults with this Wandering label? And do we need a diagnostic label BEFORE deciding what’s to happen? I know that they want to research it, but research should ALWAYS come before labeling. The end results of this label are just NOT clear and until they are, we SHOULD NOT diagnose thousands of children and adults.

I’m certain I should have shared this with my readers long before this, but we’ve been super busy over here. Tomorrow morning at 10am CST time, I’ll be on Autism Women’s Network‘s Blog Talk Radio broadcast with Shannon Rosa talking about our sons’ iPads.

As I’m sure most are aware, Daniel got his iPad for Christmas. Since then, he’s taken it every day to school. He uses it for his daily schedule, is token board and now for his social stories. It has allowed me to stay after school for Stephen’s extracurricular activities and know Daniel has something to stay occupied. We put Finding Nemo on it, so that works especially well.

He has started actively requesting me to download new stories via Read Me Stories. It’s an eBook app that allows a new eBook to be downloaded daily. Some of the stories he’s not all that interested in, but loves many of the others. We often catch him in the morning before school doing his math addition game.

He has also really fallen in love with YouTube. As his spelling gets better, he looks up and watches more videos. He also found a fish tank app where he can buy new fish and decorations. Then his games, which he has been GREAT at not playing while at school. It’s one of his two rules that he can recite, “No movies. No games.”

He also has been able to show his classmates a few things on it. They are of course fascinated by the fact that Daniel has an iPad, but they ask him questions and he answers. While I don’t think it’s made him any more friends, it has really opened up his communication with his classmates. It’s amazing what a simple device can do.

Next up is to buy him an iPad pen so he can start working on his writing skills. As nice as the writing programs are, they just don’t translate to the fine motor delay without the use of a pen. We gave one of the two USB dongles to the school for easy transfer of pictures, and kept the SD card one for ourselves. I’m just so glad they are willing to use it!

To find out more about Daniel and his iPad as well as Shannon Rosa’s son’s progress. Catch us tomorrow!

Daniel has been really enjoying his iPad this past week and a half. Being home and iced in, it’s been nice for him to have some familiarity to his day. We just bought Stories2Learn this evening along with the iPad SD/Camera USB dongle. So a week or two, I should have a review of that.

iReward

When we first looked at the iPad option, I thought without a doubt that iEarnedThat was going to be our token board. I loved that it had puzzle pieces, ended up showing the reward, and had the ability to use it for multiple kiddos if needed. (You never know with two Autistic boys in the house!) What a shock when I bought it, added all the pictures of his rewards at school first, and showed it to his teachers. I couldn’t undo. You had to completely delete the goal and remake it each time you wanted him to work for that reward. I was devastated.

I had seen iReward, and while the only real difference I had seen in it and iEarnedThat was a price, and the neato ending with your completed prize, I had really dismissed it. How wrong I was!

This app may not be a spiffy looking, but it does many things with ease. First, it works excellent as your typical token board! At school, they’ve always used a little board with velcro’d pennies and laminated pictures for the reward. Quite honestly, this app is exactly that! Except, instead of pennies, there are stars, or smilies, or check marks. You can reset the rewards so it’s not one time use. This is great for ‘our kids’. The rewards are displayed with an image of your choice (so yes, you can add your own photos!).

It’s made it really easy to help him earn his rewards. It keeps track of the stars, so you don’t have to keep it open the whole time. And Daniel loves to click his stars (he prefers the red stars) once he’s completed his tasks. It was seamless change from lo-tech token board to this. I highly recommend it for those looking to replace their lo-tech solutions. It is available on iPhone, iPod Touch, and iPad. Grembe, the company that produces iReward, also has several other apps. They also seem to be taking baby steps to developing for Android. One only hopes that iReward will be ported over for Android users!

Grembe’s iReward Demo: