Oh my, how things have changed!

Recently, I was at an event and the conversation wandered to territory that caused me to say something about my son, and I mentioned that he was autistic. The person I was talking to assumed I meant figuratively.  As we chatted, I said something about the Asperger nature of my son's behavior making it impossible for him to do something, and was met with something like "yeah, everyone is like that."  

Nine years ago (can it really be nine years!!??) when my son was diagnosed, few people knew what Asperger's was, let alone identified as having similar characteristics.  Now it's nouveau cool.  It took several "takes" to clarify that I wasn't being figurative or colloquial in my use of the terms; my son actually has Asperger's, actually couldn't have coped with whatever we were discussing, and has the medical/educational diagnoses (to say nothing of the IEP's, placements, and emotional scars) that back it up.

As April, with Autism Awareness Day and Month being almost upon us, I think about the double-edged sword that "awareness" is.  So many people are "aware" of autism; far fewer have a clue about what autism actually is or means.  They know it is being diagnosed with greater frequency.  They know it is something they never used to hear about.  They don't really know what it is, or what people with autism need in order to become the most productive members of society they can become.  Unfortunately, the providers, who need to know these things, seem to be almost as ill informed as the general public on how to properly support this population.  So we slog on - another April, another month of "awareness," another barrage of vacciners vs. anti-vaxxers.

Some day, this will be ancient history.  And we'll wonder how we could all have been so cruel to each other, and so, so stupid.

Paul Offit meets Stephen Colbert!

In some areas, there was a lot of "buzz" about Paul Offit's appearance, last night, on the Stephen Colbert television show.  There was a Facebook page dedicated to the "event," and a rather heated debate place between anti-vaxers and Offit supporters.  


Some early posts on the FB page had indicated that some anti-vaxers were expecting Colbert to skewer Offit.  Those viewers were, no doubt, deeply disappointed.  Colbert's questioning of Offit was done in a way that gave Offit ample opportunity to explain his position, and for Colbert to throw some funny barbs in the direction of the anti-vax crowd.  It was just silly enough to be Colbert, and serious enough to get the point across.  


The vitriol that was being posted on the FB page was amazing, to me.  There was at least one person, maybe more, who seemed to be spending her whole day just posting - one post after another.  The thing is, her posts made no sense.  She posted quote after quote and link after link.  The links often did not prove her point, or even contradicted her point.  The claims that are so often made, that Wakefield's study had been replicated, were repeated like a mantra, but the links showed that those studies did not prove what the posters claimed they did.  Two or three of the five studies were, in fact, not really studies at all - they were case studies of one, two or three individuals who had ASD and gastrointestinal disorders.  That proves nothing about a link between the two.  Only one of the "studies" even comes close to being a replication of the Wakefield finding, and that was performed by ... Wakefield's group in Texas!  Not, exactly, an unbiased, disinterested source.  The finding is merely that there is some correlation (not significant, if I recall correctly) between ASD and GI issues.  That still doesn't link vaccines with ASD.


The moving target issue - first it was MMR, then it was thimerisol, then it was the number of vaccines ... - is huge.  But the bottom line for the anti-vaxers seems to be that it HAS to be the vaccines, even if they have no idea what it is.


I want to be clear here.  I know that some children have been injured by vaccines.  It happens, and it's awful.  It's also very, very rare.  For those children, and those families, and those friends, it is tragic.  Like just about everything else, there is a cost-risk analysis that says that the risk of those injuries is small enough that the benefit, for the vast majority of people, makes it worthwhile.  Clearly, for that person, it wasn't - but one never knows who that person will be.  NO ONE claims that vaccines are 100% safe.  Nothing in life is.  Not getting vaccinated isn't safe either.  And therein is the rub.  


While Age of Autism is vilifying Offit for his supposed blind adherence to all vaccines, they ignore the fact that he was the doctor who fought AGAINST continuing to vaccinate against small pox when the risk benefit analysis moved to the point where the risk became too high to justify continuing to administer the vaccine.  The histrionic opposition to vaccines is every bit as thoughtless as they accuse people of being when they "blindly" follow all the directions of their doctors.  


Personally, I wouldn't consider rejecting a tetanus shot for myself or my children.  The idea appalls me!  The standard vaccines, for me, are non-negotiable.  What about the others?  I don't get flu shots.  I still think there's too much hit-and-miss with the annual mix, and the annual angst about whether they got this year's right.  I'm also concerned about recent studies showing a link between flu shots and later development of Alzheimer's.  I'm also not approving the Gardisell (sp?) for my sons - I think that vaccine was rushed to market with inadequate testing and the testing for boys was even worse than that for girls.  But as far as meningitis, MMR, chicken pox, hib, Hepatitis, - my kids had all of those, and I would never second-guess myself on them.

Wakefield ... Again

The breaking news, that the 1998 study by Andrew Wakefield linking vaccines, in particular the MMR vaccine, to autism, was not only inaccurate but fraudulent, is everywhere.  One would think there was a tremendous amount of new information here.  Maybe there is, but if so, I must have missed it.  We knew, from earlier news releases, that the "information" that was published was inaccurate.  We knew, really, from the very first publication, that it had little, if any, scientific value - we're talking here about a "study" of 12 children, after all.  Since when is a scientific study considered "scientific" when it is composed of only twelve subjects?  Really? 


By the time the "study" had been withdrawn from the Lancet, we knew that the details of the medical histories were inaccurate and that Wakefield had been paid a small fortune for his expertise in a forthcoming lawsuit against vaccine manufacturers.  The obvious interest in a specific result was more than clear.  The fact that some of the children had developmental  concerns before receiving vaccinations was documented.  So, what we have just discovered, if I am understanding things here, is that ... all of this was not a mere accident?  That up until now, we thought this was all just sloppy work, and now, surprise! we just found out that it was intentional?


I guess I'm just too cynical.  It didn't occur to me that any of the "manipulation" of medical records, or any of the inaccuracies in the histories, or any of the blatant falsifications were accidental.  There was clearly a motive.  This was not being undertaken for the sake of pure science, or for the sake of helping children in need: this was being undertaken to support a particular position in a lawsuit.  There was only one outcome that was desired.  Even if, for the sake of argument, one wishes to believe that Wakefield wanted to help children/families, his motivation was to reach a particular conclusion here.  He was not unbiased or disinterested.  He had a theory that he wanted passionately to prove.


And of course, with this "breaking news," comes a huge outpouring of outrage ... on both sides of the issue.  People who look at the news and say "What a scoundrel!  He should be put in jail forever!" may be shocked to learn that there are many, many supporters of Wakefield who are lining up to defend him.  This is all, in their view, a plot to undermine the truth-teller who would seek to reveal the dangerous reality about "Big Pharma" and its nefarious intentions.  It is as if the more that is revealed about Wakefield's bad science, bad ethics, bad integrity, the more his supporters view it as proof that there is a conspiracy to silence him because he has so much important information to share.  It is circuitous "logic" that is difficult or impossible to counter, since all science that counters what he has found is dismissed as "tainted" by the researchers' supposed interest in vaccine income.  This is asserted constantly and vehemently regardless of whether or not the researchers have such an interest, and any reference to Wakefield's financial interest in the outcomes of his "research" are dismissed out of hand.  The inability of anyone to duplicate Wakefield's "findings" are similarly dismissed, while the many studies that have failed to find a connection between vaccines and autism are picked apart for various reasons.


Many people welcomed the news about the fraud as the final nail that will put an end to the vaccine-autism "nonsense."  Maybe now, the hope is, time, energy and money will be better spent on more useful things to help people and families dealing with autism.  Unfortunately, I don't think that this news will do that any more than the prior news, including the retraction of the story from the Lancet, has done to put this issue to rest.

The "Bodies" Left in Their Wake

I participate and lurk on lots of listservs and forums, and I am usually very interested in the thoughts shared by adults on the autism spectrum - about how they see the world now, about how they remember seeing the world when they were young, and about how they experienced their educational situations.  Recently, I had the sad opportunity to read what a variety of people shared about their experiences with special education.  It was, unfortunately, all bad.


Typical of the recollections shared, was that the time spent "in special education" was useless.  Often, it was damaging.  It wasted the youngsters' time, made them feel stupid, incompetent, "less than."  So many people chimed in, on this one thread, about how horrible "special education" was.  It was such a sad thread, to me ... a testament to how badly special education services are being provided to children.  If children are being automatically placed in "slow" classes, merely because they have special learning needs, we are doing them such a grave disservice.  So many of those children are bright, capable people!  They need to know that it is because of their inherent strengths that they will be able to overcome the struggles that they also have.  They shouldn't have to choose between the supports they need and their self esteem.  It shouldn't be that children can either be in classes that acknowledge and challenge their intelligence, or receive the supports that their learning or other disorders demand.


In some schools/school districts, it seems there is a definite misunderstanding about what special education is supposed to be.  Special education is neither a class, nor a curriculum.  It is supposed to be individualized for each student.  Just because a student has special education needs, does not necessarily mean that s/he should be in a classroom with all the other students with "special education" needs.  Those needs could be (in fact, probably are) very different from each other.  The needs cannot be properly addressed by putting all the students into one classroom.  Many student (some would argue "most" or "all" students) do best by being in the general education classroom, with some supports in the classroom.  And each of the students need to be in a class that meets the academic needs of that particular student, so if a student is a strong math student, s/he should be in a math class that will prepare him/her to advance appropriately in math, and to be engaged and challenged, rather than bored and frustrated.  If a student needs remediation in one subject, it does not mean that s/he needs remediation in all subjects - in fact, it is rare that someone with special needs (or anyone at all?) has "even" level of skills in all areas.


So now, all these young adults, with these horrible memories of special education, are opting out of "special education" for their children.  Is it the right choice?  Are most school districts still making the same mistakes that those young adults experienced?  I can't say.  For my son, that is not the case, and I know I'm very lucky for this.  My son is in an "approved private school."  I am not a big believer in "inclusion."  For some students, it's great, but for my son, it would not have been, and the approved private school he attends has been wonderful.  He receives a high level of academics (which he needs), and the social supports he needs, and the extensive supports he needs for writing - the one academic skill where he struggles ... unless it is a topic that is self-chosen.  Are there trade-offs?  Of course.  His "pool" of potential friends is very limited, since the school is so small, and the student body includes many who would not be appropriate choices (there is a wide age-range, and a wide functioning level).  But for my son, that is not the primary concern - all he needs is a couple of friends, and he has them.


But back to the rest of the student population.  If there is a whole population of students coming through whose parents won't allow them to receive the services they need, because they, the parents, received such poor services when they were students, what are we doing to our children?  It is so necessary to demand of our schools that they truly provide the free appropriate educate (FAPE) that is mandated by federal law (IDEA).  Refusing services, rather than demanding good services, is not the answer.  The special needs of these children won't go away simply by refusing services.  The children will continue to struggle - they just won't have the supports to which they are entitled.


The better school districts aren't providing "one size fits all" special education.  That's really the bottom line.  The school districts that are need to be stopped.  Until that happens, the damage they are doing is multi-generational.  When someone, or something (like a school district) injures a child, it is never "just" that one child who is injured.  It is that child, that child's family, and that child's children.  The ripple effects go on for longer than anyone can predict.

IEP Season

Even when things are going well with my child's school placement, IEP season is always stressful for me.  From what I hear from other Moms, my impression is that this is a fairly common situation. There is never a sense that the schools or the school districts can really be trusted ... not really.  Every time things go well, it is like it's miraculous!  

I'm really happy that we had, overall, a wonderful IEP meeting.  Of course, there were a few little "moments," but none that really mattered.  Unfortunately, those moments still "stick" in one's mind.  There's the school psychologist who doesn't seem to understand why observing in only one class, and choosing, as that class, a less-preferred subject doing a least-preferred activity when the teacher is out, so the class is being taught by a substitute teacher, might not yield a tremendous amount of useful information.  He, of course, thinks he's gaining insight.  Everyone else at the table, who actually knows the child, knows that they could have predicted everything that occurred without his brilliant "insight," and he was bringing nothing new to the table.  Then there's the galling statement that no speech and language evaluation was necessary for the Reevaluation Report because it wasn't required to determined eligibility.  Seriously?  Did they forget the part that the RR is supposed to drive the IEP?  And that the findings of the RR are supposed to guide not only whether the child receives services, but also the type, frequency and duration of those services?  Sigh.  Of course, I did request (demand) that a speech and language evaluation be done, and it will be done next year, before next year's IEP meeting, along with a psycho-educational evaluation, which was conveniently not done (because ... ??? it wasn't necessary either?  because children don't change enough to warrant a new evaluation three years later?).  

I'm in luck, because the SLP who works primarily with my son is incredible, and she knows him well enough, and does interim assessments when necessary, so she doesn't need to rely on a formal evaluation.  But at the back of my mind is the worry -- what if she leaves?  Then where will he be?  And that, at the bottom, is the real reason for a good solid evaluation, and a good solid IEP, when you have a great situation in a great school; it's for the "what-if" situation.  When things are going well, you don't need it.  Things are humming and life is good.  I feel, almost, like an observer in the education of my son.  It's almost (almost) like having a typical high schooler.  He chooses his classes, to the extent that he can, and then I find out about them.  He chooses his research topics, and either I find out about them or I don't.  Sometimes I have to get more involved, and that's okay.  It is truly wonderful, however, to be working with a school that understands my boy, and to see the great strides he is making.

As I sat in this IEP meeting, I kept thinking about those who are committed to inclusion for everyone, and thought about how wrong that would be for my child: he would never have been able to come this far in an inclusion setting, because he needs the security and the intimacy that the small setting of his current school affords him.  Could he have thrived in an inclusion setting of a small private school that was not for special-needs only students?  Perhaps; maybe even probably (assuming they had the supports he needed).  However, the public schools are not likely to provide that kind of option, and that's okay with me.  The opportunity of being with other students more like himself has also been an excellent one for my son.  I am not saying that all students would necessarily benefit from this, but for students like my son, it is a truly normalizing experience.  But beyond that, he is in a school where the principal is able to form enough of a relationship with him to know that her position as principal is not enough to elicit from my son, any sense of a need to cooperate with her demands.  For him, he needs to have a relationship, a sense of respect for the individual.  Titles mean nothing to him, and he won't do something just because someone "in authority" tells him he "must."  Meanwhile, the adults in his school are teaching him about the realities of the world "out there," and the importance of getting past his rigid sense of how things ought to be, so he is more able to function in the world as it is.  It's working.  And isn't that what education is supposed to be about?  Not political agendas, not advancing various theories of how to teach, but to actually teach what needs to be taught?

How About "Inclusion as Appropriate?" or even as Desired?

I was reading another blog, and the issue of inclusion was being addressed ... again.  Inclusion is one of those topics that keeps getting talked about - over and over and over ...  The concept is so seductive, but the reality is so disappointing.  Most parents who wind up placing their children in appropriate private schools find that they are very happy with those placements -- that their children are happy, they thrive, and that life is better not only for their child, but for the whole family.

I have never fully accepted the hypothesis that inclusion is "best." Certainly, it is for some students - but not for everyone. And I don't buy the assumption that severity of disability necessarily determines the ability to include successfully; some severely disabled students can be successfully included, while some less severely disabled cannot. I think it depends more on the nature of the disability, the manifestation, and how the student feels in the mainstream environment.

For some students, private placement afforded them the first opportunity to feel safe, and to feel like they were in a true peer group. For others, it was the first time they felt like they had teachers who understood how to teach them. Many students feel "normal" for the first time when they are in private placement. When a student's energies can go toward learning, making friends, and experiencing school the way we expect typical students to do, isn't that a benefit that we want for ALL our children? If our children can do that by being in schools that are designed and equipped to provide that experience for them, and to teach them how to advocate for themselves so that they are able to "face the world" when they move on to their next stage in life, isn't that what we ultimately want for them?

If we were discussing anything besides education, there would be no discussion: if you needed a lawyer, you would look for a specialist; if you needed medical attention, you would look for a specialist. Why is it considered "wrong" for parents to want the educators of our children with special needs to be specialists in the particular needs of our children? Why is it wrong for us to want EVERY TEACHER our child deals with to understand our child's educational needs? We don't want just the "autistic specialist" to know what to do; We don't want just the "SED specialist" to know how not to say things that could trigger a crisis in a fragile child.

I am tired of being asked why a certain support can't be provided to a child within a mainstream classroom - the particular support may be able to be provided, but the kind of environment a child needs cannot be magically provided. Inclusion is a wonderful concept - as a concept. It works for many children, with many diagnoses. It does NOT work for everyone, and it should not be expected to. The current push to do so is completely ignoring the individual needs of the "I" in IEP, for the sake of educational theory/philosophy. It is at a horrible cost for those who are being sacrificed on the alter of philosophical rigidity.

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.