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Connecting the Isms

  • Posted on November 1, 2012 at 11:11 PM

What does it take to hate someone you don’t know? What does it take to dismiss someone you don’t know as unimportant or unacceptable? What does it take to merely underestimate them?

Racism and sexism are the two major instances of this in this country. But “we” also hate, dismiss, and/or underestimate people for their religion, for their political affiliations, for their country of origin, or even for their sports team. “We” hate, dismiss, and/or underestimate people for their abilities and their impairments.

Why? What does that prejudice get “us?” There’s got to be some sort of motivation, doesn’t there? To continue holding onto a prejudice, you either have to be exposed exclusively to examples that fit your expectations or you have to resist being corrected by your own experience, by the logic and experiences shared by others, and by a lot of other information that is available in order to hold onto something that makes no sense.

People hurt others through prejudice and acts of prejudice, through bullying and teasing, through abuse and neglect. The only connection I can find is an under-appreciation of life—particularly other people’s lives—and an over-emphasis on self.

What is this but a lack of empathy? Yet, it’s perfectly “normal,” so normal it’s rampant in our society and in many others. Is this what people strive for when they try to make their children “normal?” Why?

A Call for Support

  • Posted on October 24, 2012 at 8:00 AM

So, I’m writing a book. It’s become my big to-do project. But I also have to write to support my family. Every hour I spend on my book takes away time I can write to support my family. So, I’m raising money to offset the difference.

But that’s just my immediate motivation. There’s a whole ‘nother dimension to this fundraising business that I want to talk about.

In my community, we have a big fancy library that is full of books and movies and CDs and CD-ROMs and books on tape and all sorts of good stuff. Nothing wrong with that! But, when the boys were first diagnosed with autism, there was very little “good” stuff on autism in that library. Last time I checked, there’s still not. It’s not that they didn’t have any books on autism, but they were all skewed away from anything remotely pro-neurodiversity. I typed “neurodiversity” into the computerized card catalog and it just laughed at me. Actually, it tried to redirect me to something that didn’t even start with “neuro.” If I remember correctly, it was “necromancy.” Sound like fun?

Sometime after that, it was Autism Awareness Month and the boys’ school had set out a selection of books about autism that were available through the Family Resource Center. Jenny McCarthy’s latest book (I didn’t bother to look at the title) was prominently displayed. Nothing remotely pro-neurodiversity was available.

I’ve looked at various collections available in my community since then. I’ve read some books that I found intolerable, others that I found misguided, still others that I’ve found merely unhelpful. All the books that I have found useful and appropriately respectful of the subject matter have been books I’ve had to buy for myself.

So, here’s my plan: I’m going to donate copies of my books to as many of the places I looked for loaners as I possibly can. I’m going to assume the full cost of donating in my own community, but I’m asking for your help donating books to other communities. I’m targeting public libraries, Family Resource Centers (both in the community and in the schools), and any similar lending library families use to learn about autism. It’ll take time for me to hit them all, of course, and I’m not even sure I could locate them all. But I’ve got to start somewhere.

I’ve already pledged that any donation of $250 or more will earn a donation of five books. I’ve also pledged that any donation of $500 or more will earn a donation of ten books. I already have one donation of $500, for a total of ten books.

Here’s a new pledge: If I reach my half-way mark of $1,250 by November 15th, I will use a portion of the funds raised to donate a total of 25 books, plus any donations earned by single donations.

To reach this goal, I need your help. If you’re considering donating, then please donate before November 15th. If you can’t donate, but want to show your support, please press the “share” and the “like” and the “tweet” buttons on the link provided. Please leave comments. Please like comments. Please help raise the awareness level of this campaign and encourage others who can afford to do so to donate.

Thank you! Together, book by book and dollar by dollar, we can ensure that people who are looking for information on autism can find information that helps them to empower the people with autism in their lives!

Embracing Chaos on Fundrazr

  • Posted on August 29, 2012 at 8:00 AM

So, after years of people telling me I need to turn the story of raising my children into a book, I’m finally doing it. I even have a publisher. But the publishing company I’m partnered with (and, with Influence Publishing, it is very much a partnership) cannot provide me with an advance. Julie Salisbury has, however, provided me with training on how to raise funds to help support my publishing efforts.

I now have a campaign on Fundrazr to help me support my family while I divert working time to writing my book. If you are financially-able, please support my cause with a donation. If you aren’t, you can still support my cause by spreading the word on the social media sites of your choice and leaving a comment on my campaign page, which raises my status on Fundrazr. Every little bit helps!

In the meantime, check out my YouTube video to learn what this is all about.

(And yes, that's me speaking!)

Autism Organizations: Which Ones Do You Trust?

  • Posted on July 30, 2012 at 8:00 AM

There are many autism organizations out there—from ASAN to Autism Speaks and all sorts of organizations in between and among them.

They all have their own agendas, their own missions, their own purposes. They each behave differently, though there are similarities. Their memberships are different, though there are similarities.

Which ones do you trust and why?

Up until now I’ve steered clear of joining any organizations, because there are often legitimate voices criticizing each one. I did my stint in politics before my children’s diagnoses and my experiences destroyed my faith in the integrity of political organizations. It is far too easy for political organizations to lose sight of their original agendas, to play lip service to those agendas, while directing the efforts of the organization into some expedient side-road. And that’s for those organizations with legitimate goals in the first place.

I’m not sure I’ll ever go back on that decision. But membership—that commitment—isn’t the only form of participation. Still, it’s difficult to know which organizations are worthy of becoming an ally and which organizations are too vested in their own self interest that they act at the expense of the causes they proclaim to support, the causes that are their public reason for existence.

So, which autism organizations do you support and why? How do you show that support?

Awareness

  • Posted on April 16, 2012 at 8:00 AM

April is Autism Awareness month.

April is also Child Abuse Prevention month.

This coincidence doesn’t have to be ironic.

Autism Abuse from Luis Blanco on Vimeo.

Executive Functioning in Low-Functioning Autism

  • Posted on December 23, 2011 at 8:00 AM

Recently Gavin wrote about executive functioning.  I started with Willy, and now I’m going to explore executive functioning in low-functioning autism.

In the first post, I provided a recap of Willy’s development on the autistic spectrum.  Now, here’s Alex’s:  Unlike Willy, Alex never developed typically.  This means, in short, that Alex didn’t regress, because he never developed the social and communication skills that Willy demonstrated early on and lost.  Throughout Alex’s life, he’s been delayed.  These delays are often regarded as a combination of autism and cognitive disability, but the latter has not been proven.  It is often assumed simply because it hasn’t been disproven.  Alex’s disabilities are very visible.  His inability to speak effectively for communication, his body movements, his toe-walking, and his vocalizations and mannerisms all make sure that Alex stands out as someone who is different.

With regards to Alex, there is so much focus on other deficits that executive functioning gets short shrift.  For example, Alex has no effective means of communication.  This is a big, huge barrier, a serious disability which has far-reaching implications.  Every aspect of Alex’s development suffers because of the communication barrier.  Thus, the communication challenges get a great deal of attention.  Added to that, Alex lives in a state of near-constant dysregulation.  This, too, gets a lot of attention.  Most of the therapy and educational services Alex receives focuses on one or the other or both.  A fraction of our energy is focused on building independent living skills, like getting dressed, getting his coat and shoes on, putting things away, and completing routine chores.  To a certain degree, these skills often involve fine motor skills, which is another area of deficit.  But to a greater degree, all these skills rely on executive functioning skills.  And, lo and behold, when I stop to think about it, Alex has fewer executive functioning skills than Willy and fewer accommodations and supports to compensate for that deficit.

See, for Willy the example of “get ready for school” used in Gavin’s post describes his need to break down regular tasks to a more basic level of instruction.  I can tell Willy “It’s time to get ready for school” and then break that major activity into minor tasks like, “It’s time to wash your face and your hair, then take your shower” and “Get dressed, then come put on your shoes.”  If I were to try that sort of thing with Alex…well, just forget about that.  It’s not going to happen.

For one, Alex is still in diapers and he doesn’t change them himself.  And that’s where things get kind of…well, once I seriously start thinking about this, I’m not proud of my responses.  You see, I coach Willy through his morning routine.  I provide support to help him get himself ready.  I haven’t been doing that with Alex. I’d just do it for him.  On the surface of things, it would just take too much time and too much effort for me to coach Alex through these activities.  Then again, it’d been a long time since I’d tried, since it’s easier to just do it for him.  But that doesn’t help Alex build skills nor does it give him the opportunity to exercise the executive functioning skills he has. 

So, I tried an “experiment.”  Instead of doing everything for him, I broke the tasks down to a level Alex could do independently.  I changed his diaper, and then, instead of dressing him, I handed him his each article of clothing as independent tasks.  “Put on your socks.”  When he’d complied, “Now, put on your pants.”  Then, after he’d done that (and gotten some help with the snap and zipper), “Now, put on your shirt.”  At that level of instruction, and with some assistance on the fine-motor tasks, he was able to dress himself.

And we haven’t even gotten to Ben yet.  See, often I describe Ben as being in between Willy and Alex.  That’s mostly the focus on language and sensory management.  In those areas, Ben is between Willy and Alex.  He doesn’t talk as much as Willy, but he’s a more effective communicator than Alex.  He’s not as regulated as Willy, but he’s more regulated than Alex.  But, when it comes to executive functioning, Ben is still further behind than Alex.  I just do things for him.  And, to a great degree, that’s not likely to change any time soon, because he’s still working on things at a more basic level.  With Willy, it’s “get dressed, then put on your shoes.”  With Alex, it’s “put on your pants, then put on your shirt.”  With Ben, it’s “pull the shirt over your head, then put your arms through the sleeves.”

The take-away lessons here are:

1) Executive functioning deficits apply to low-functioning autism as well as high-functioning autism.  Thus, parents shouldn’t scoff at “executive functioning” as a real sign of disability, instead they should look at their child and consider how they can help him or her become more independent by providing accommodations and support at their child’s level regarding executive functioning tasks.  They should take a look at their child and the ways they help their child to see if they’re building skills or taking the easy way out.  They should take a moment to consider whether sensory dysregulation is the culprit for the most recent meltdown or whether it might be confusion or frustration with regards to executive functioning.  Don’t let the invisible fall to the wayside just because there are more visible disabilities; don’t assume they can’t, just because they require support and accommodations to succeed.

2) More than that, one thing I think we should all be considering more seriously is if managing deficits in executive functioning are best served by coping mechanisms and accommodation strategies, or if there is a skill-building aspect to it that we haven’t properly considered (or that I’ve never seen properly considered).

Is there another way of looking at these abilities (another context or frame they could be put into) that would translate them from the typical mindset to an autistic mindset?  For example, visual schedules are one of the accommodation strategies that are used.  Is there another level we could take that to that would translate that accommodation into an independent skill that is developed and then self-sustained?

*Please note that I will be taking a week off of blogging.  I'm going to have an at-home vacation.  My next post will be up on Jan. 2, 2012.  It's already written and scheduled, so I can't forget.*

Executive Functioning in High-Functioning Autism

  • Posted on December 21, 2011 at 8:00 AM

Gavin recently wrote about executive functioning. After reading his post, I couldn’t help but think that much of the focus on executive functioning is in relation to high-functioning (or low-visibility) autistics. Parents of low-functioning (or high-visibility) autistics tend to dismiss or downplay the disabling aspects of autism among those with high-functioning or low-visibility autism; sometimes, it’s these individuals themselves who insist autism isn’t a disability at all. Partly in reaction to this, high-functioning or low-visibility autistics tend to focus on the disabling aspects of executive functioning differences. So, in reaction to Gavin’s post and the greater dialogue, I wanted to take a moment to consider executive functioning as it manifests in my household of three boys with autism who are at very different functioning levels. Due to the length of the original post, this will be a two-parter.

I’m going to start with Willy. For those who aren’t regular readers, here’s a brief recap: When Willy was first diagnosed he displayed classic regressive symptoms of autism, meaning that he developed more-or-less normally and then lost many functioning abilities, including the ability to communicate effectively. In retrospect, there were warning signs regarding his development prior to this regression, but as we were not familiar with autism and autism awareness had not progressed to its current levels, these warning signs were delegated to the “wait and see” category of concerns. When Willy started to regress, these concerns took on new meaning and the search for an explanation began. Willy’s resulting diagnosis is autism. At the time of his diagnosis, his autism was considered severe and institutionalization was recommended. Willy turns thirteen today, so this wasn’t all that long ago. With the help of several therapies, and due to Willy’s own development (which is beyond our control, obviously), Willy has regained the skills he lost. He is now considered fairly high-functioning, but a great deal of his functioning ability is due to the adaptations and accommodations we’ve been able to make for him.

On the surface of things, Willy appears very high-functioning. He talks, attends classes with his peers, pursues multiple interests, uses his imagination, and tells stories. He has friends. He’s well-liked in school. On the surface of things, executive functioning skills seem to be his biggest weakness. Getting through his day requires quite a bit of coaching in regards to scheduling his day and scheduling the different steps in each task. Getting his homework done is a hard-won achievement, which heavily relies on a physical schedule of assignments and a “learning lab” which is kind of like study hall, except with extra help. On the surface of things, all the work we put into building and maintaining his executive functioning skills helps us compensate for his disability to the point that his disability often seems invisible to us.

But that’s only the surface of things. As high-functioning as Willy is, when you put him next to his typically developing peers, especially those at different age levels, you can see delays in reasoning skills development, social skills development, and language skills development; and, we’re back to the pervasive developmental disorder. In time, Willy’s reasoning, social and language skills might catch up. They might. But there will always be differences in these areas. Willy will always think, socialize, and speak/write differently. Executive functioning is a bit tricky. It seems less emphasis is put on developing executive functioning skills, i.e. translating these skills into a do-it-yourself set of abilities that Willy can understand, and more emphasis is put on providing him with coping mechanisms, support, and resources to compensate for this disability.

There are two basic take-away lessons in this:

1) Willy’s “invisible” disability becomes quite visible if you compare him to his typically developing peers. The invisibility is most apparent when comparing him to his brothers, who have fewer functioning skills. Furthermore, his “invisible” disability becomes very visible if you take away the supports and accommodations that make this level of functioning possible for him. Thus, it would be ridiculous to claim that Willy isn’t disabled simply because Alex and Ben are more disabled.

2) How we approach executive functioning seems to assume that it is an ability (or disability) and not a set of skills that can be developed and internalized, with appropriate adjustments. The general approach seems to be one of accommodation and support; whereas, the approach to Willy’s language and social development seems to be one of skill development and support. I’d be interested to know how wide-spread this assumption is and why it is made.

Are executive functioning differences a matter of life-long disability? Or is it that we have yet to discover and apply in the general autistic population the proper approach(es) to building skills and providing support until those skills are self-sustaining?

Imminent Burn-Out? (Part 4—The Next Word and Resolutions)

  • Posted on November 21, 2011 at 12:00 PM

Again, I knew I was adjacent to the autism spectrum, I read about Rachel’s experiences, and I panicked.

The threat to autistic children is real. The threat to autistic adults is real. Combine the two and the threat becomes even stronger. And these threats apply directly to my family. This is why I fight. This is why I advocate. It’s not the only reason, of course. If my family was suddenly safe from all future threats, if we got a pass on all the discrimination and prejudice, well then I’d still fight—because nobody should have to face this kind of threat. But we do. It’s real. Right now, my boys cannot advocate for themselves on this level. They cannot face down CPS and win. They shouldn’t have to; I shouldn’t have to. But I had to and I did, but if I had to do all over again, with the loss of functioning that Rachel described, I would lose. And that possibility is incredibly scary. The consequences for my children are terrifying.

Reading Rachel’s words, I felt this terrible ticking clock hanging over my head. I drive myself hard—too hard. I know that. Everybody who knows me (in-person) knows that. Periods of burn-out, of being too tired to keep up, of running out spoons, of hiding in my basement office to avoid the very loud noises my children make when they’re all playing in parallel—these things are inevitable, and as long as Mark and I are a team and I can keep up my end of the bargain, they’re just part of the flow of our lives.

But what if I couldn’t keep up? What if it wasn’t temporary? What if it stretched on for months or years? Pardon my language please, but my thoughts could best be summed up: Oh shit! Is that going to happen to me?

I kept reading. I finished The Uncharted Path and moved onto Blazing My Trail and…I kept reading, sighing in relief. While I don’t mean to minimize the significance of burn-out, the dramatic shift in abilities got a new explanation in Blazing My Trail. They were due, to a great degree, to a medication she took that made things worse instead of better.

The relief was palpable. I know with certainty never to take that drug. Besides, I’m horrible about taking daily medications. And I try medication only as a last resort—or after significant experience that it will be necessary, such as with bronchitis and antibiotics. And, well, the only time I found a psychological medication (for example, an anti-depressant) that didn’t provide more side-effects than positive effects was when I had that terrible reaction to a birth control shot that lead to a serious case of post-partum depression. The drugs then were just a temporary fix to get me by until the birth control hormones were out of my system and it was only effective because my depression was more poignantly chemical than usual and far stronger than I usually experience.

So, avoid drugs—check.

But, that’s not enough. She also described a plan that helped her regain abilities she’d feared she’d lost forever. It was simply a matter of taking care of herself and being responsive to her distinct needs.

Now, that’s not as easy or as obvious as it sounds. Not for me. I’d always thought that I should be my lowest priority, after family, God, work, school, friends, etc. I knew I had to sharpen the saw and all that…but that didn’t make it a priority, did it? Not really. Certainly not.

This scared me into reevaluating and reassessing the importance of my own well-being. Because, yes, actually, I am a priority. As a caretaker, I need to take care of myself so I can continue to take care of others. It seems obvious. In fact, I knew it, on an intellectual level. Reading Rachel’s story has made it visceral.

So, take better care of myself—check.

I can’t stop pushing myself. There’s too much to do. But I don’t have to push myself so hard that I break. I don’t have to ignore my own needs and well-being. In fact, if I pay attention, I’ll be able to do more, because I won’t get quite so tired.

But, wow, was it a scary, rocky trip—and I didn’t even have to live through it!

Imminent Burn-Out? (Part 3—My Panicky Aftermath)

  • Posted on November 18, 2011 at 12:00 PM

So, I knew I was adjacent to the autism spectrum and then, I read Rachel’s The Uncharted Path. I read about how she once had a lot more functioning capabilities, which she lost, and how she attributed that loss to burn-out.

I admit, when I first read that, I panicked for a good, long while. I wrote a lengthy post in near-hysterics about what Rachel said and what I feared. The post was highly emotional, a bit incoherent, and I asked my husband for his opinion before posting it. He agreed that I shouldn’t post it at this sensitive juncture (a reference you will either understand or not).

You see, it’s not that I’m afraid of being disabled. I’m not afraid of losing the ability to do things that I can do now. For me, unless I die very young, that’s inevitable. I’m a writer and I’m already showing signs of arthritis. I’m 32 years old. I use my hands and brain, almost exclusively to any other part of my body, for hours at a time several times a day, every day. So, unless I die young or arthritis is cured, I will lose the ability to work as I do now. I’ve looked ahead to that future, acknowledged that it will slow me down, and committed myself to not letting it stop me. If I lose enough functioning to be diagnosed on the autism spectrum, I can do the same. It’s not me I’m worried about.

There is a powerful, local government agency that has the authority—with few checks and balances—to remove children from the home of their parents. Here it is called Child Protective Services. For most of my teenage and adult life (the parts of my life that I was at all cognizant of their work), I was fully on-board with their mission. I’ve seen abuse. I know what it does to kids. I’ve seen kids have their lives ruined by abusive parents. I’ve seen some kids reclaim their lives, either as children or as adults. I’ve seen some people who struggle with reclaiming their lives every day of their lives. And I’ve seen some people who either don’t know reclamation is possible or have given up or continue to live in abusive situations their entire lives. I’ve seen it. I know. So, how could CPS be a bad thing?

For the same reason that autism advocacy is necessary at all. I was told: “No family should be burdened with three children with autism.” I was told: “The goal of therapy is to help your children become indistinguishable from their peers.” The person who said these words had tremendous influence with the local CPS agency, and when we didn’t comply with her “suggestions” to prioritize normalization or clinicalize our home, she called CPS—repeatedly. And they sided with her—completely. If they could, they would have removed the boys and put them in group homes for children with disabilities where they would live until they were normalized enough to be put into foster care. This was explained rather explicitly. Luckily, they couldn’t fabricate a case strong enough to make that happen.

But what if I burned-out? What if I became sufficiently disabled to qualify for an autism diagnosis? It would all start up again. The person in question would, if she became aware of it, begin harassing my family all over again. And I don’t think the autism advocacy movements have made enough progress for my family to survive the encounter.

So, I panicked.

Imminent Burn-Out? (Part 2—Rachel’s Experience)

  • Posted on November 16, 2011 at 12:00 PM

So, I knew I was adjacent to the autism spectrum and I thought I knew what that meant. Then, I read Rachel's book The Uncharted Path.

As the full title, The Uncharted Path: My Journey with Late-Diagnosed Autism, implies, Rachel was not diagnosed as a child. Rachel lived for 50 years with no explanation for the ways she experienced life. Essentially, Rachel passed, or strived to pass, as neurotypical—for 50 years. She coped, she lived a successful life, she had relationships, she had a child, and she had a career—for 50 years.

Then, she started researching autism in regards to her father, and that sense of similitude that maybe it applied to her as well crept in. This search for answers culminated with an official diagnosis:

After a half-century of feeling invisible, unworthy, and utterly strange, I wanted someone else to see me, to hear me, to understand me, to take me seriously, and to not send me away until I got a label that made sense. (UP, page xiv)

Sure, she struggled. Sure, it was work. But she coped. Self-doubts (I am oh-so familiar with those) aside, she coped for fifty years!

I used to be able to do so much. I could get up in the wee hours of the morning, drive long distances, go grocery shopping, work full-time at a demanding job, teach my daughter, support my family, pay the bills, cook the meals, clean the house, plan birthday parties, include all the neighborhood children in our holiday celebrations, exercise, and do just about anything anyone asked me to do, except stand on my head. (UP, page 98)

And then, she burned-out. She stopped coping. She lost functioning.

Those times are over. I’m sad that they’re over, and I’m also very relieved. I’m finally learning that I am not an infinitely renewable resource. Walking through the world and taking care of myself is a lot of work. I have to use my energy wisely. As I experience the effects of a lifetime spent defying the way I was made, taking care of myself is the most vitally important work I can do. (UP, page 99)

Rachel describes the differences between what she used to do and what she could do as she wrote her book in vivid detail. I felt a familiar similitude to her experiences growing up and becoming an adult—working hard to be a success, but always being a bit different, standing out in a way that’s not conducive to social success. I felt a similitude to that woman who pushed herself so hard and did so much for others—career, family, friends. I understand, because I do it. I’m living that life right now. And I get tired. I run out of spoons.

And that’s where the fear comes in. Rachel’s words, “not an infinitely renewable resource,” were something of a blow—a terrible, fear-filled blow to my sense of reality.

What if we have a lifetime allotment of spoons? How many have I burned through? How many do I have left? Am I going to crash and burn?