The Internet Is Destroying Parenting

OK. So I'm being a bit hyperbolic. But let me explain. When my oldest child was young, there was no internet. I couldn't go online to find things out or get support, so when things came up, I spoke to other moms - real life moms! I know, that's so ... 20th century. And it was the 20th century. It meant that I couldn't find only other moms of kids with her exact diagnoses. It meant I spoke to whatever other moms I found and connected with. Sure, there are some real benefits to being able to find other parents of kids who are struggling with the same issues you're slogging through. And if you've got something rare, or unusual ... the internet can be nothing short of a lifesaver.


But, and this is where the internet sometimes makes me totally nuts ... it is not your left-handedness that made you autistic (or your autism that made you left-handed); the length of your second toe is not related to autism; ear lobe attachment is not related to autism. I think you're getting the idea. When people break down into totally diagnosis-specific groups, they start thinking that absolutely everything they see or notice is related to that diagnosis. Parents start thinking that every "issue" they have with their kid is related to the diagnosis.


It isn't. Kids are, first and foremost, kids. They will have bad days at school, sometimes, just because they have bad days at school. It won't always be about the diagnosis. Let them. They will have fights with friends because they are kids and kids have fights with friends. It's not always about the diagnosis (yes, I know the diagnosis complicates things - but sometimes we parents complicate things even more). We have to let them learn to work it out. We can offer to help them figure it out, we can offer to role play, we CANNOT get involved in every mini-drama that unfolds. It's not fair to them, and it's not healthy.


Sometimes kids who are well-past toilet training age have regression issues. Some of those kids are autistic, some are not. But if the only parents that parents of autistic kids ever talk to about "issues" anymore are parents of other autistic kids, we think it's an "autistic" issue. Surprise! No one wants to talk about it, but it's not necessarily an autistic issue. And if we "blame" the autism for everything, we can miss something else ... and it could be something more important.


I love having other "autism moms" to talk to. I don't know what I'd do without the internet. But I miss having the "real" community that seems to have dissipated with the emergence of the virtual world. The real world was so much more nuanced, had so many more sides to it - and there was always such a wonderful jolt of surprise when you found out something new and unexpected about someone you'd known for a long time in a different context. Somehow, the online relationships tend not to be quite as dynamic.

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.

Inclusion ... the Never-ending Discussion, but Where is the Real Conversation?

I attended a "training session" discussing the potential for allowing for increased inclusion in classrooms, in this case, providing ABA (applied behavioral analysis) services to autistic students in inclusion classrooms.  There was an interesting mix of people - lawyers, parents, advocates.  I'm not a strong advocate of inclusion - I certainly think it's a great goal for many children, but I don't think it's right for everyone.  I think it's a mistake to think that there's anything that's right for everyone, and the concept that the goal in education should be that everyone, no matter what, should be in the same setting ... it's wrong.

I was very put off by the attitude of the presenter.  She kept asking questions as if she was asking questions, but she thought they were "to make people think about their prejudices."  It never occurred to her that she was operating from her own set of prejudices.  She asked whether there was any service that could not be provided within the mainstream class.  I raised my hand and gave an example:  the autism support that is provided in a local elementary school includes a curriculum that addresses social thinking.  It is a curriculum that is provided to only the kids who need it, i.e. the ASD kids.  "Well, couldn't all the kids get it?"  "Sure, but they'd need 20 of the person who provides it, instead of one.  That's an expense that's not reasonable."  "Well, couldn't they train the classroom teacher to do it?"  "No."  She didn't like my answer.  This presenter's way of dealing with everything was to minimize the skill of the provider of the service, to minimize the challenges of the students involved, and to behave as if anyone could do it.  "It isn't rocket science," she said several times, about ABA.  She's right, it isn't rocket science.  But that doesn't mean that everyone is well-suited to doing it.  It also doesn't mean that everyone has the knack for doing it.  I didn't even have time to get into the fact that the way that ASD children learn these things is SO different from how NT kids learn it, that to teach it together would defy the very reason for having the curriculum for the ASD kids in the first place!

There was discussion about the "odd" phenomenon of concentrating children with certain disabilities in particular schools within a district.  I don't understand why this is odd.  People act like all kids with special needs can be taught with the same techniques.  This is not true.  Why would we NOT want teachers who are particularly skilled and experienced with certain populations to teach them?  Why would we want what this presenter kept referring to as "natural proportions?"  We don't look for doctors who have "natural proportions" of patients with rare disorders!  If someone has a rare disorder, they look for a specialist in that field.  When someone has a complex legal matter, one does not go to a general practitioner; nor does one go to a trusts and estates attorney if one has a torts case - even though the T&E attorney can learn the rules of evidence!  If someone has a rare learning disorder, why should they not have a teacher who is specialized in that specific area?

When I spoke to the presenter during the break, and told her of my experience with children who had been placed in private schools, and whose experience was that it was only in those private schools that they felt like they were actually included, she said she'd heard that from kids before ... yet, she was dismissive of the perspective.  How can we not pay attention to the kids who we are supposedly advocating for, if we say we are advocating on their behalf, for their benefit, and they are telling us that they feel excluded in the general education environment, and they do not feel stigmatized or otherwise "excluded" by being in a specialized school?  If they tell us that being with other students "like themselves," they find, for the first time, a sense of community, how can we not honor that?

One thing that occurred to me, after the training, and after my conversation with the presenter, was that the people who are coming up with some of these concepts must not be members of a minority group, of any kind.  How could anyone else come up with the idea of "natural proportions."  People from minority groups tend to congregate in particular areas so that they can form communities of "their own" within the larger community.  That's why there are "Little Italies" and "Chinatowns" and neighborhoods with various other ethnic identities.  If a particular ethnicity constitutes 1% of the national population, it is the rare member of that ethnic group who chooses to live in an area where they are that proportion of the population.  There is comfort in community.  If people look at any of the online communities, it is clear that this is true for many people with disabilities as well.  For many people with autism, finding out that "autism" is what explains so much of what has been puzzling about them (or their world) is a huge relief, and finding others who share this label is wonderful.

Maintaining "natural proportions" in the face of this, to me, makes no sense.  Why should a child with Asperger's be expected to never meet another child of about his age in school, who shares a similar diagnosis, because with a 1 in 100 ASD diagnosis level, and the functioning levels being widely varied, the chances of having a true peer is minimal.  That is not fair to the children, the teachers, or the support staff.  

So much needs to be weighed, but it seems like those who advocate for inclusion are not listening to any of the reasons why sometimes, sometimes, there are valid considerations for thinking beyond pure, total inclusion as the "gold standard."

Book for the newbie parent

I've been reading "Making Sense of Autistic Spectrum Disorders: Create The Brightest Future for Your Child With the Best Treatment Options" by James Coplan, MD.  It's been taking me forever to get through it - partially because I'm finding it somewhat dense reading, and partially because I keep getting distracted by other things (life, you know).  The thing about the book is that I like it, but I'm not sure who the realistic audience is for it.  The target audience is, no doubt, parents of newly diagnosed children.  But it is so intense that I'm not sure that those parents could wade through it; and I'm not sure that the information they'd most want (which is not necessarily the same as what they most need) is at the beginning, where they would want it to be.  


Dr. Coplan gives a backdrop, of sorts, at the beginning.  This makes sense, yet most parents want ANSWERS, up front.  Before they get to the end of the book, where Dr. Coplan is warning them about trendy, possibly dangerous treatments, parents will have already been taken to a TACA meeting or two, caught up in a heart-felt conversation about HBOT treatments, and well into a GF/CF diet trial!  Dr. Coplan considers these things the modern-day equivalent of snake oil sales, and some of them can be dangerous.  He debunks many of the Generation Rescue claims bluntly and with no compassion for those who believe in them - or at least not for their beliefs.  I am not offended by this, but I do think it could turn off some who are confused and inclined to want to investigate "with an open mind."  Dr. Coplan doesn't see any gray area here, and sees any open mind in the area as open to having junk inserted.


He actually is pretty flexible, in the sense that he is open to the use of omega 3's, since he views it as not illogical and not dangerous.  The use, however, of dangerous and potentially lethal "treatments," like chelation, is something he has no patience for.  He doesn't, however, simply dismiss it - he explains, quite clearly, the dangers of the treatments - chelation can cause brain damage or death; HBOT can also damage brain cells, and the (questionable) benefits that have been observed can be obtained in less expensive and less dangerous ways.  


The part of the book I found most useful was his review of various methods of intervention - from ABA to Floortime, to RDI; various classroom approaches; explanations of the uses of OT, PT speech and language.  His review of the use of medication was also quite useful.


Another issue I thought was very important was that Dr. Coplan discussed the fact that ASD has what he calls a "natural history."  That is, whether or not a child receives a particular kind of therapy, or any therapy at all, there will be changes in the way the child behaves, interacts with the world, and matures.  Simply because a child progresses, one cannot ascribe all the progress to whatever intervention a child is receiving.  Progress will occur regardless, simply because a child is maturing, getting older.  Depending on issues, such as the child's cognitive level and degree of atypicality, the child's progress will be greater or lesser, but there will be progress, there will be changes.  The changes will not be even - there will be spurts, and there will, just as with typical children, sometimes be a two-steps-forward-one-step-backwards type of thing.  We can't view everything as being because of a particular intervention!


I wish this book had been out eight years ago, when my son was first diagnosed ... of course, much of what he says was not yet discovered then!

Vaccines, Autism, and Maintaining Friendships

I don't believe that vaccinations cause autism.

The more I learn about Dr. Wakefield, the more horrified I am by him.

I have friends who are certain that their autistic children are vaccine-injured.  I respect them, I know they truly believe this, and I even believe that some children are injured by vaccines - just that it is an extremely small number, and that the vast majority of people believed to have autism were not injured by vaccines.  In order not to offend those people who truly, deeply believe that their children were injured by vaccines, I don't post anything on Facebook about Dr. Wakefield, or vaccines, or the absurdity that I believe his dangerous, faulty "research" has wrought.   

They, of course, post a great deal about how awful they think Dr. Offit is.  They post to support Dr. Wakefield, for all he has done "for us."  I don't get it.  They look at "all the money" Dr. Offit earned.  They don't notice "all the money" that Dr. Wakefield earned or stood to earn from the tiny study he did, using unethically obtained tests from a too-small to be significant sample, drawing conclusions that had no support.  The damage that he has done is incalculable.  Aside from the people who have been exposed to and endured the diseases that they should, rightfully, have been vaccinated against, there is all that money that has gone into research, again and again, to disprove this connection.  And this continues to be done.  And the money that goes into publicizing the inaccuracies of Dr. Wakefield's theories - all this could have been used to research, publicize and provide services for individuals living with autism.  Legitimate research. Needed services.

How many children have been really injured from pre-natal exposure to measles, because so many are not being vaccinated?  How many have been really injured from the high fevers and other effects of the illnesses that these vaccines had all but eliminated?  

I don't know whether we live in an age of intense fear of conspiracies, or whether that was always an underlying "fear of the masses," but this kind of fear, which is based on a fundamental lack of understanding of the underlying science, is dangerous to everyone.  As science advances, and as the number of people who understand that science seems to decrease, proportionally, the fear and distrust is likely to increase ... to the detriment of all.

The Facts In The Case Of Dr. Andrew Wakefield

I know that the MMR/vaccine - autism issue is a highly charged, controversial one.  For better or worse, I've never thought there was a link between autism and vaccinations.  Do I believe there are some individuals who are injured by vaccines?  Of course.  Do I believe that the current increase in numbers of children diagnosed with ASD is due to immunizations?  No.  This came to my attention, and I really, really liked it.



The Facts In The Case Of Dr. Andrew Wakefield

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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.