I Guess We Do "Self-Isolate"

People often "notice" that parents of children with special needs seem to "find" each other.  We "self-isolate."  We don't seem to socialize with the "regular" parents the way the "regular" parents do with each other.  Yeah, we're a weird bunch.  Ugh.

Some people even wonder how it is that we manage to find each other.  It's actually amazingly easy.  We, unfortunately, have way, way too much experience with everyone else, to have any trouble at all, recognizing members of our own tribe.  When we speak of our kids, and we mention something "different," something happens with outsiders.  They often don't know they're doing it, I guess, or they don't know what it looks like, what it feels like, to us.  Sometimes, we are even stupid/open/naive (choose your adjective) enough to let drop the actual diagnosis our child carries.  To us, it is often no big deal - a fact, like the color of his hair, or the fact that she loves to sing.  But the horror on your face, or the way your body turns away, even ever-so-subtly, or the fact that you suddenly have someone you need to talk to or something you need to do, or that you gasp, ever-so-slightly.  You, Are Not. My. People.

When I find one of my own, the response is warm.  Often, it is something like, "oh yeah, mine is ..."  Or, a laugh, a smile, a "don't you love how ..."  It can be a question about schools, teachers, doctors.  A reference to who in someone's life is either similarly affected, or affected with something totally different ... yet still, something.  Even a "s/he's so [fill in the blank: sweet, smart, cute, endearing].  Members of MY tribe are not horrified by their children - we love them, just as, presumably, you love yours.  We don't expect others to have different responses to our children.  Unfortunately, we are used to it.  Well, not exactly used to it.  But it has happened, way too often.  We can't deal with it, though.  So, we self-isolate.  We find our own peer group; we find our tribe.  We find ... each other.  And it's way easier than you would think.  And you would be appalled, if you saw it through our eyes. At least, we would hope so.

Isolation Amidst Community

As parents of children on the spectrum, we tend to find ourselves isolated - our children don't "fit in," so we don't fit in.  Our concerns and worries rarely mesh with those of other parents of our children's age-mates.  


When our children are very young, we worry about toilet training - way past the ages of the other children.  We worry about our children's ability to carry on conversations - not necessarily to speak, but to have a two-way, reciprocal conversation.  We worry about whether they will ever learn to tie shoes, button buttons, zip zippers.


When our children get older, we worry about whether they will be able to write, sign their names, read their own handwriting.  We worry about whether they will be able to handle the departmentalization of middle school (and we are terrified about the social aspects of those years, which are difficult for so many students, even under the best of circumstances).


During their high school years, we worry about "where they are going;" whether they will be able to go to college, whether they will be able to be independent - in college or in a job; how they will survive.  We worry about whether they will be able to make friends outside the structure of a school environment.  Will they find life partners, if that is what they want?  Will they have friends, family, community?


How ironic, that we worry about our children's future isolation as we become isolated in caring for them.  If our children are "low functioning," we think we have nothing in common with parents of "high functioning" children.  Similarly, if our children are "high functioning," we feel like they are SO different from "low functioning" children.


The labels are killing us.


The reality is that all kids who have special needs have more in common than it might at first appear.  All their parents have to explain their needs to their schools; all their parents have to fight with school personnel to get the proper accommodations/modifications for their children to get the education to which they are entitled.  All of them feel "outside."  All of them are the "other."  All of them are isolated.


I hear many parents of children with ASD talking about how isolated they feel.  I know they feel that way.  I certainly have felt that way, and still do - often.  But if we want to be kind to ourselves and each other, we need to stop artificially narrowing our "pool."  As long as we think of our "peer group" as only those other parents who have children with the same approximate diagnosis and the same approximate functioning level, from the same geographical area, and the same general age range, we will be horribly, devastatingly isolated.  But we don't need to be.


There are lots of other people out there who are equally isolated, equally in need of support, equally in need of community, and equally facing schools/peers/families who view their children as somehow just not trying hard enough, or just [fill in the blank].  Whether it is a mental health issue, or a learning difference, or something else - many, many parents have faced the glares, comments, snickers ... the judgments that said that what was "wrong" with their child was the result of "bad parenting" and certainty that if they were the parents, then none of those nasty behaviors would be happening.  


One of the best things that I have ever seen is a well-functioning special needs parent group.  When the special needs parent group is functioning (like a PTA for special needs parents), it lets everyone get together, and the level of functioning, the labels, the ages - they don't matter!  And because there are people with kids with all different kinds of issues, they learn from each other, and there is so much more to learn when there is so much broader a range of issues to work with.  People whose kids are primarily dealing with "x" suddenly realize that there might be some "y" going on, and they might never have realized it if they had been hanging around only with people with "x."  


Another very unexpected benefit of these groups is that, for some families, when they have additional kids, if a later child has something "different" going on, the parents have already learned about many different kinds of issues that happen with kids, and they are both more likely to recognize issues, and are less likely to be fearful about the potential issues they could be dealing with.  

Parenthood, Giftedness, and Isolation

Like pretty much everyone, I've been watching the tv show, Parenthood.  There was a lot of buzz when the show first started, about Max, the boy with Asperger's.  Was he portraying the child realistically (yes)? Were his parents doing a good job of showing what it's like to parent a child like Max (also, generally yes)?

Some more interesting issues have come up, and been less discussed.  The extended family's ways of dealing with Max, and their ability to recognize the realities of his needs, have been interesting.  In particular, the grandfather's perspective, which tends to be a combination of denial and self-centered irritation at the very idea that he might have to inconvenience himself for the sake of his grandchild, is all too familiar to parents of children with autism spectrum disorders.

Another interesting issue was the appearance of the therapist who was, almost miraculously, able to help Max do things that his parents had not - play games at home, interact with other kids at the playground ...  The mother feels inadequate and talks about how easy the therapist makes it all look.  The therapist basically chalks it up to not having to be with him all day.  I found it irritating.  Therapists work long and hard to get the results that they showed in basically no time at all.  It doesn't happen immediately!  Learning social skills, learning to apply them, and being motivated to try, is time-consuming work.  Children learn these things by taking baby steps, not by going to the park one day and having a perfect total experience.  I really wish that, when they show that therapy can help, they were more realistic about the work behind it.  The way this was shown, it looks like "if the parents had just" ... been more persistent? been smarter? been firmer with Max? known what to do? ... they could have done it easily.  Having the reassuring therapist comfort the mother doesn't counter that impression.  It just makes it look like therapists will make the inept parents feel better that they didn't do a better job.  Autistic behavior is not caused by bad parenting.  The fact that therapy helps doesn't mean that the parents are bad parents.  Parents, faced with an unusual developmental situation, need guidance from people who understand it.  The usual advice, from well-meaning but clueless family members, is useless.  

But the issue I was particularly intrigued by was the issue that came up when one of the other couples was concerned about their daughter and sought some support from Max's parents.  They had their daughter evaluated (it all happened SO fast!!!), and it turned out that there was "nothing wrong, she's just gifted!"  I was hoping there would be some follow up on this, but so far, there hasn't been.  There was some awkwardness about "breaking the news" to Max's parents and Max's parents talked about how they kind of hoped that their niece did have some issues so they wouldn't feel so isolated, but two more episodes have aired, and there's been no more conversation.  I'm disappointed.

First, this isolation that Max's parents feel, even in the context of this great, close extended family, is an important issue.  Parents of kids with special needs often feel like we are living on the outskirts.  Our brothers/sisters/parents generally don't really know how to deal with our kids.  They keep a bit of a distance.  They say stupid/hurtful things.  Sometimes they realize it; more often they don't.  In our communities, we are similarly isolated.  Our kids are "those" kids.  When we are lucky, we find each other, and then we talk about IEP's, NOREP's, sped directors, ESY, and all those other things that the rest of the parents don't understand.  It's a different language, different everything, from what they other parents talk about.  When you have typical and atypical kids, you have a foot in each world, but the isolation part wins.  If, in a family that is that close-knit, a couple can feel isolated, imagine what it is like in the broader community, where the other members of "your group" don't have the same kinds of bonds as they do in this family?  Isolation, among families with kids with special needs, is very, very real.

The other disappointing thing, for me, about labeling the other child "gifted" and dropping the whole story line is that this seemed like a great opportunity to do some myth-busting.  Too many people thing that "special ed" means children are stupid, and "gifted" means children need no special education intervention.  In fact, that is not true at all.  Studies have shown that gifted kids are more likely, statistically, to have special learning needs (besides the gifted issues) than are "average" kids.  Also, many kids with specific learning disabilities and with autism spectrum disorders are also gifted.  One does not preclude the other.  Some school districts try to force parents to choose between gifted and "special" education for their children.  That is an unreasonable and unfair choice.  When school districts insist on watering down curriculum in response to students' learning differences, they are not providing an appropriate education.  Students need teachers who can teach in ways they learn, not teachers who simply stop teaching because it's too hard.  That's wrong.  It cheats the students out of the education to which they are entitled, and it wrongly tells students that they can't learn things which they are capable of learning, but which they need to learn in ways that are different from the ways that other students learn.

Teachers need to be more flexible in how they teach.  We keep trying to teach our autistic kids to be flexible thinkers.  Well, we need to teach our teachers to be flexible teachers.  If more of our teachers could think more creatively about how they teach, and how their students think, it would benefit ALL their students, not only their special education students.  If that were something that was a routine part of teaching education, perhaps the concept of what is "good regular teaching" would expand, and more teachers would have the skills to teach a wider range of students.  Perhaps fewer students would be considered to be in need of "special education services" because "specially designed instruction" wouldn't be as necessary - many of them would be part of typical instruction.

Inclusion or Isolation?

I happened upon a study, Involvement or Isolation? The Social Networks of Children with Autism in Regular Classrooms by Brandt Chamberlain, Connie Kasari and Erin Rotheram-Fuller.  It was originally published online in 2006, and published "hardcopy" in 2007.  It looked at children in grades 3 through 5, and how they viewed their social networks compared with how their classmates viewed them.  Children with ASD were compared to their neurotypical classmates.  Not surprisingly, the students with ASD were more socially isolated than were the neurotypical students, and this difference increased with the age/grade of the children.

The researchers looked at measures of whether the "social isolation," which was admittedly not severe, resulted in feelings of loneliness on the part of the students with ASD.  I think this was the wrong result to investigate.  First, I don't think the researchers necessarily understood what social relationships mean to children with ASD.  They were looking at things completely through the prism of neurotypical thought, so their questions were missing the mark.  They asked the children questions about whether they felt lonely, left out of things at school ...  These are not the major implications of social isolation for many children with ASD.  They might be for some (particularly for girls), but for many, many children with ASD, the more serious implication of social isolation is the resultant status of being "the other."  As "the other," the child becomes "fair game" to his or her classmates.  S/he then becomes the constant target of teasing and bullying.  Being socially challenged, they also have a more difficult time than most children handling the remarks that come their way, and the tendency to respond awkwardly, or in ways that amuse their classmates, "invites" increased teasing and bullying.  Not having a social circle leaves the child without "protectors," or even anyone with whom to commiserate.

The issue of isolation of children with ASD in inclusive education environments is an important one, especially as the move towards more and more inclusion in education gains momentum.  I would like to see more attention paid to this, and in higher grades.  If there is a difference between third and fifth grade, imagine what the results might show if middle and high school isolation were explored!  Most parents of children in those environments find those years much more difficult than the earlier years, when the peer groups are more stable and more "forgiving."  As the students age and the confluence of puberty and departmentalization causes massive social complexity, students with ASD become more socially isolated and have less buffering - there is no longer a group of kids who know and understand them, and who travel from class to class with them.  The students from elementary school are struggling with their own changes and transitions, and are rarely available to ease the way for the children on the spectrum, who are left in a much scarier, less predictable environment than they experienced in elementary school.

Before the education system gets any further committed to "inclusion for everyone," it would behoove us all to look at what this really means.  Inclusion may not be the appropriate educational goal for everyone.  We need to be looking at what will provide an appropriate educational environment for each student - isn't that what individual educational plan means?