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Self-Isolation

  • Posted on December 11, 2014 at 10:00 AM

Socializing is work. It takes effort. Even when the people I am socializing with are people who mean the world to me, the people I love, and even the people I love who I also live with, it takes work to socialize. When I’m overwrought, overwhelmed, overextended, overcommitted, and overtired, it takes a great deal of effort just to function. In those times, it’s easier to pull in on myself than it is to socialize.

I’ve been there a lot in the last few months. I’ll horde a small bit of energy for minimum-necessary-interactions, but I just can’t “be there” whenever I’m wanted, or even whenever I’m needed. According to a great deal of literature touching on a broad range of topics, this is not a “best practice” for human relations. The emphasis is almost universally on “being there,” wherever you are, whoever you’re with. If you’re at work, then be there. If you’re at home, then be there. If your home is your work, then set boundaries so you can be there with whatever set of tasks/people you’re with at the moment.

My conscience knows this is right and true. But, in these times of high demand and low self, it feels like a matter of survival to hold back.

When it comes to minimum-necessary-interactions, I force myself to be there, as best I can, no matter what. When I get the boys up and off to school, when I tuck them into bed, and the little moments that happen every day in between. I know my children need me to be there during these moments. But even then, even when I try my best, I tend to be so tightly strung that it’s far too easy for me to snap.

Ben, my baby, my willful young man, tends to trigger my breaking points. He’s not cooperative. He resists going to sleep. He resists waking up. Even with routines in place, there are transitions that he just doesn’t like. Oh, sure, eventually he will fall asleep, and eventually he will wake up, and if these transitions occurred according to his natural rhythms, he’d be just fine. But, like me, his rhythms are out of sync with the general public and the general public determines when school starts. To be honest, I don’t like it any better than he does. There are times when homeschooling seems all too attractive, if only because we could keep our own wacky schedules. Then, I remember that there would still be doctors’ appointments and a myriad of other engagements that have to be on someone else’s schedule. So, while I sympathize with Ben, I don’t give in. Except, sometimes I just don’t have the energy to do it right and my being there just makes things worse. His stubborn streak sets in and our volumes rise and Alex gets upset and the reassuring morning routine turns to chaos.

I’m a kids-first kind of person. It’s wired into my worldview. As the parent, it is my job to satisfy my children’s emotional/social needs as best I can. I feel a great deal less responsibility for the emotional/social needs of other adults. This is especially hard on my husband. We’ve been married for nearly seventeen years. We’ve been through the proverbial fire together. Sometimes it’s hard to tell whether we are interdependent or co-dependent or both, but we function best when we are in sync. But, when I pull back, I can’t provide him with the emotional support he needs. I do save up some time/energy for him, too; but, it’s not enough. He keeps trying to engage me when I have nothing left to give. And then there’s my mother, who needs me too, and I have even less to spare for her. The guilt just adds to the stress.

I live in a society that admires those who can “stand alone.” Self-sufficiency is encouraged. But there’s another side of that. There are people who stand alone because they have to and there are people who stand alone because they can’t/won’t stand with others. Those of us who isolate ourselves may do it out of a need to survive—a feeling that we have to pull in on ourselves, rely on ourselves, suffice ourselves in order to survive—but that doesn’t mean it’s healthy.

I can already hear the surge of criticism: I’m defining “healthy” as “normal” and all that. But that’s not it. We isolate ourselves to survive, because we feel endangered by others. Sometimes this danger is real—it is a learned response, after all—but the response becomes ingrained, it becomes triggered not out of any true danger, but out of habit. Human beings, even those of us who function differently, are not wired to be alone, even when we tell ourselves quite convincingly that we are. We’re not.

Socialization may be work, but it’s also a need. I know this, I understand this, yet the defense mechanisms remain. I know they can be changed. I know that I can change them, yet I feel as if I cannot. I feel as if I’m trapped in the isolation of my own making. My husband reaches out, my mother reaches out, but I am as intangible as mist. I slip through their grasp. I go it alone through the dark, even as I scramble for the light. But there’s no switch to flip. A lifetime of learning cannot be undone in a single moment. The darkness I see is behind my own eyes. It’s inside me. It’s a choice made too many times. But I can choose differently.

Voices: Susan Boyle

  • Posted on December 11, 2013 at 10:00 AM

“Celebrity” autism diagnoses aren’t terribly uncommon. Of course, in most “celebrity” diagnoses I’ve seen, it’s the child of a celebrity being diagnosed with autism and the celebrity using their fame to raise awareness and drive for a cure. It’s a relief, then, to see another voice take on the issue from an entirely different celebrity perspective.

Here are some quotes from an interview with Susan Boyle:

“It was the wrong diagnosis when I was a kid,” she says. “I was told I had brain damage. I always knew it was an unfair label. Now I have a clearer understanding of what’s wrong and I feel relieved and a bit more relaxed about myself.”

Unfortunately, this is a common experience for women with Asperger’s. For several reasons, it’s especially difficult to get an accurate diagnosis of autism when you’re a girl. What’s even more unfortunate is that this is still true. We’re making progress, but there’s still an assumption that the autism spectrum is primarily a “place” for boys.

“I am not strong on my own,” she admits. “When I have the support of people around me I am fine. I have a great team.”

There is an assumption that, because people on the autism spectrum have trouble with socialization, they have a lesser need for friends, family, love, fellowship, and all that goes with it. This statement is in direct challenge to that assumption and is consistent with the experience of many people on the spectrum.

“I think people will treat me better because they will have a much greater understanding of who I am and why I do the things I do.”

I would hope this is true, but considering the lingering prejudice against people with neurological differences, I fear it will not be.

Homework Helper

  • Posted on September 18, 2009 at 12:00 PM

Between going to school and trying to launch my freelance career, I’ve been quite pressed for time.  This has been a difficult adjustment for everyone as I’ve struggled to squeeze out time for family, school, and work.  So, it’s difficult for me to sit there and simply remind Willy that he knows how to do his own work.  My constant busyness makes this feel like a waste of time.  Recently, I had a flash-point.  I’d tried to get Willy to sit down his work, and then I was going downstairs to work on my own homework.

That was the plan, but Willy kept asking for my help.

“You don’t need me here, Willy,” I told him.

“I do, too.  I need your help on this, this, and this,” he said, pointing to his three assignments.

I looked at the assignments, two of which were math.  He didn’t need my help on any of these.  Well, maybe the vocabulary, which was defining words based on their context in a paragraph, but certainly not on math.

“I need your help,” he said, pulling me in.

I figured I’d help him get started and then break away.

“If you need help, ask daddy.  And I’ll come up and check on you in a little while.”

“What about this one?”

“You can do that one.  It’s just like last one.”

And so the argument began all over again.

Finally, another adult intervened.  I fled downstairs, thinking over the whole scene.  And it occurred to me that we were both right.  Intellectually, Willy could do the problems.  His need for me was emotional.  Willy gains a sense of security from my presence.

And helping my son feel secure is not a waste of time.

Back to School Ruminations

  • Posted on September 3, 2009 at 8:00 AM

Comparing and contrasting Willy’s educational experience with that of his brothers always makes me a little sad.  Willy is fortunate in that he’s found a way to take the world as it is and interacts on a level that most people understand.  He’s very much autistic and still faces many challenges in how he interacts and what he’s considered able to do and what he is able to do (which are not always the same).  But, he has a strong support system at Roosevelt and is able to compensate for most of his differences to succeed in a socially recognizable way.  Alex and Ben are on a different track.  They do not demonstrate a sufficient amount of self-control, communication, or interaction to participate (as per the Janesville school system) in an integrated environment.  Their educational needs are met in a segregated classroom called the CD room – for cognitively disabled.  The fact that they are not, in fact, cognitively disabled plays little significance in this designation, because they are not able to communicate their intelligence in an academically recognized fashion.  Roosevelt is not equipped to meet their needs, so they are sent to attend school together at Kennedy.

I don’t mean to slam Roosevelt or Kennedy.  The decision here is made at a level neither school can change.  Both are goods schools with good people and both try to service their students as they are able.  But I cannot help but remember my own time in school.

In one of several grade schools I attended there was a student with Down ’s syndrome.  I only saw her on the playground and many of the students made fun of her.  She first came to my notice when I saw another child push her for no apparent reason other than her poor balance meant she’d fall with only a little push.  I didn’t usually see things like that, because a friend and I would go off as far in the field as we could to play our own games of make-believe.  This girl would always come out a few minutes later than us, so we’d already be gone.  After seeing our classmate push her down, we went to her an invited her to come play with us.  She couldn’t quite follow our game, but enjoyed our company. 

In junior high, I was somewhat segregated.  They called the classes I took “gifted and talented” or “differentiated.”  They were the opposite of CD classes, designed for students who excelled instead of those who struggled.  I enjoyed these classes, because I was challenged academically for the first time in a long while.  Yet, integrating with non-differentiated students in the regular classes was difficult.  I was set apart, and they knew it.  Most of my fellow differentiated students had the social skills to compensate, but I didn’t.  I was an outsider.  Not like any of them and being segregated for most of my classes seemed to make that worse.

In all my time going to school and in all the different schools I attended, I was only aware of the one girl with cognitive disabilities.  The rest were kept out of sight, but I know now there had to have been more.  Kennedy doesn’t try to keep Alex and Ben out of sight.  Each child is assigned to an age-appropriate classroom with their typically developing peers.  Each will visit this classroom as their schedules allow.  And, at my recommendation, last year on Fridays one of Alex’s peers would come to the CD classroom to visit him.  This became a special treat that his peers looked forward to and enjoyed.

So, progress is being made.  Yet, I know fully integrated schools exist and that they can work for the benefit of all the students.  I know that children with special needs should not be kept out of sight for the comfort of the bigots.  I remember sitting in school, surrounded by my predominantly white peers, and learning about the history of segregated schools.  I remember when I first learned what happened in Little Rock.  I remember raising my hand and asking, quite honestly, “But why would they be angry that the kids wanted to go to the good school?”  I didn’t understand.  In a way, I still don’t.  I can wrap my head around racism and bigotry.  I see it as wholly illogical, but I understand that it is driven by emotion not intellect.  I cannot wrap my heart around it.  I cannot understand those emotions that drive racism and bigotry, however well I can label them:  hatred, fear, disgust.  I understand that people crave a sense of commonality and that those outside that commonality face prejudice.  That it is so, and understanding that it is so, doesn’t help me to understand why.

I’m thankful for the progress that has been made and look ahead sadly to how much more must be done.  But, my boys are lucky.  They have a chance.  So many have their chances stolen from them by prejudice and hatred.  I cannot help but think my failure to understand leaves me powerless to affect needed changes.  But I will try.  Everyone deserves the chance to live, to be educated, to grow, to develop – without artificial roadblocks keeping them from their own potential.

OAR’s Telemedicine Research

  • Posted on August 25, 2009 at 12:00 PM

I had the very special pleasure of talking to Dr. Peter Gerhardt, President & Chair of the Scientific Council of OAR (Organization for Autism Research), for an article that is still under consideration.  In our conversation he mentioned OAR-funded research on Telemedicine.  So, when this popped up in my e-mail box, I had to check it out.

“The two-year project will measure the effect of telemedicine support on parents’ ability to provide PRT to improve functional verbal communication in their children with ASD.”  It compares parent treatment with and without telemedicine support after the same initial training program.  If telemedicine support proves effective it may provide a cost-effective means of helping families provide effective learning environments for their autistic children that facilitate the development of readily recognized social communication skills.  In many areas, cost and shortage of services result in long waiting lists and limited service options, therefore if this procedure proves effective it will increase access to timely treatment options.

As a side note:  “PRT is an evidence-based model that uses both a developmental approach and the science of applied behavior analysis (ABA) procedures to target areas that underlie the core symptoms of autism, including impairments in social interaction, communications, and repetitive/ restrictive behaviors.”  The value of the “evidence-based model” may seem questionable after reading Michelle’s post.  However, OAR states:  “Among the myriad interventions that claim some degree of effectiveness with individuals with autism, interventions based upon the principles of applied behavior analysis (ABA) have the most comprehensive and sophisticated research base by far.”  That, admittedly, offers little reassurance in the face Michelle’s report.

Making the Connection

  • Posted on August 23, 2009 at 5:15 PM

When Willy was diagnosed, we were told Willy would never say “I love you.”  The doctor wasn’t just talking about the verbal expression of love, but implied my son lacked the ability to feel love.  Now, seven years later, Willy says “I love you” at least a dozen times a day.  He expresses love through hugs, kisses, and quiet acts of compassion.  It is easy to see and to hear and to feel Willy’s love.  He has deep connections with the important people in his life – both adults and children, whether they are family, friends, or service providers.  He loves and he shows it in a way that’s easy for others to recognize.

Alex, on the other hand, is predominantly non-verbal.  He’s said “wuv oo” maybe a dozen times in his entire life.  Like all his words, these are rare precious.  Yet, even for Alex, the implication that he does not love or cannot show his love is entirely wrong.  Alex loves the same way he does most everything else – passionately, loudly, and deeply.  Alex is sparse with hugs and kisses most of the time, then has sporadic outbursts of affectionate touching where he wants to be hugged and kissed for long periods of time all at once.

Alex shows his love in other ways that become easy to read if you make the effort.  His face lights up when his Noni (grandma) comes over and he bounces up to her, holding onto her, and trailing behind her like a loud, wiggly shadow.  He grabs people he loves as if he’s literally trying to pull them into his experience.  He jumps at them and presses himself against them like he’s trying to occupy the same space as they are.  His touches can be gentle, but usually he uses the same pressure on others that he likes for himself – deep, rich pressure that reaches to the bone.  When he greets those he loves his vocalizations reach an excited pitch that has a different tenor and tone than any other time.  He loves with his whole being, every fiber and sinew, and expresses it the best way he knows how.  Yet, many people outside the chaos of autism would not see or interpret his love accurately.

* * *

Some people assume that “normal” people can communicate with each other and autistic people cannot or cannot do so easily; thus, there is either no communication or faulty communication coming from the autistic people.  Those who have studied communication, however, know that communication is a difficult process.  Even “normal” people rarely communicate effectively.  What I say, you may hear, but you’re likely to interpret it differently than what I mean – if you’re listening at all.  Truly effective communication is rare.  People hear, but they don’t listen; people read, but they don’t seek to understand.  We talk, but that doesn’t mean we communicate.

When an autistic person is trying to communicate, this problem may be exacerbated by the different ways some autistic people use to communicate.  For example, Willy is heard more often than Alex, because he communicates in a way that neurotypical people are familiar with; whereas, Alex communicates in a way that is all his own, and most people have no experience listening to him and assume he’s not communicating anything.

In this sense, it is true that some autistics do not communicate effectively.  In order to effectively communicate, the hearer has to listen and try to understand.  That does not mean it’s true to say that autistics do not express themselves or their emotions.  Whether they use words or not autistics do express themselves.   Some use a set of verbal and body languages very different from our own.  Others learn the set of verbal and body languages we use daily, but it is as if these means of communication are foreign to them, like French or Spanish is foreign to a native English speaker.  Even if they become fluent in the ways we communicate it will still be more challenging for many autistics to communicate unless we learn their verbal and body language as well.  Communication is a two-way street, and we shouldn’t expect them to do all the work.

* * *

A while back my brother came to visit.  He can rarely afford to make such a trip, so it’s always something of a shock when he’s here (for him, not us).  He loves his nephews dearly and tries very hard to communicate with them, but it requires a period of adjustment, especially with Alex.  Willy is verbal and very physical and adores his Uncle Pat to no end.  It requires very little work for them to re-establish their connection.  Benjamin Patrick, my brother’s namesake, loves to be lifted high and tossed around.  That and an unconscious sense of trust (that’s doled out selectively, but uncanny wisdom) is enough for Ben to build a bond with someone.  Alex is more puzzling for most people.  It’s not that he adores his Uncle Pat any less, or that he doesn’t appreciate the physical play that my brother is so good at, but Alex communicates in a way uniquely his own.  Understanding Alex can be difficult even for those of us with a lot of practice.  For someone without that practice, sometimes it’s simply impossible; often an interpreter is necessary.  Alex is also more wary than his brothers.  He likes to stay back and observe before he joins in any action.  He’s also adapts more slowly to major changes, but handles minor ones more easily.  So, when my brother came Alex held back at the first.  But once Alex regained his sense of equilibrium while having Patrick in the mix he was able to interact with Uncle Pat as well as he can, but it still was difficult for Patrick to understand him.  It wasn’t that Alex didn’t express his love or his enthusiasm in having Uncle Pat around, but that it was more challenging for Patrick to understand him.  Patrick knew this, accepted it, and did the best he could to understand.  Most people don’t bother.

In order to connect with people socially, communication is required.  In order to have communication, there needs to be an expression, a “listening” period, and comprehension.  To say autistics do not express love or that they do not try to make connections with others is wrong.  The expression is there, but may come in different forms than most of us are familiar with.  The questions becomes:  “Are you listening?  If you are, are you trying to understand?”  From what I’ve seen, the answer is often no.  We hear, but we do not listen.  We talk, but we do not communicate.  When communication fails, we blame others because they didn’t speak to us.  Most of us don’t stop to ask, “Did I listen?”