Tag Archives: DAN

Silencing Ourselves- A Plea for Civility in the ASD Community

Poking around the autism blogosphere last night, I came across some commentary that unsettled me.

In one thread, a mother of a young autistic boy, asked  if anyone knew of a DAN doctor near her city who didn’t have a long waiting list.  It was a simple and direct question, not inviting a debate or attack upon her online person.  But this unfortunate visitor had popped into the wrong thread.  She was immediately attacked for even thinking about trying a biomedical approach to helping her child.  Phrases along the lines of “b****hslap Jenny McCarthy”, “autism cult”, “inflict that upon your child”, “stupid”, etc. began flying.   I felt sorry for that mother.  She probably, like many of us, is desperate to try anything to help her child.  The fact that she was even on the internet looking into options for him shows her love.  Sorry parents simply aren’t in these forums, blogs, and social networking groups.  They’re too busy neglecting their children.

On the flip side, I’ve seen parents who make mention of their child refusing to eat anything but bread get trounced by biomedical devotees condemning them for not being willing to “cure” their child by trying a controversial treatment.  The implication being that one day when that parent is “willing” to help their child, they will look into it.  How unconscionably cruel.

I have seen parents marveling at their children’s progress since beginning ABA therapy, only to see them attacked for “inflicting” a therapy that amounts to little more than “dog training”.  Is it so difficult to imagine that some therapies are beneficial to some but not others?

I, along with others, have been chided for using the word “autistic” instead of using “people first language”.  As though parents who use the word “autistic” don’t put their children first.

I have seen parents and teachers denounced for not wanting to implement full-inclusion for their autistic children.  For me, that’s a choice about what is best for the child.

And, most recently, the “neurodiversity” movement has been blasting well-intentioned parents.  Please do not misunderstand me.  I’m a teacher.  I’m all for appreciating the diversity of children and promoting acceptance.  I like some of the positive things that the concept of neurodiversity can bring about.

But neurodiversity, in my opinion, does not have to preclude parents wanting to help their children fit in a bit better in a complicated world.  Recently, I’ve come across many threads of angry people in our community insisting that parents of autistic children be happy about the challenges facing their children.  It seems there is great pressure these days to deny the difficulties, disappointments, fears, and sadness associated with the loss of a typical childhood.   Parents feeling sadness and worry are encouraged to deny there is any grief associated with it whatsoever.  Told to buy perky t-shirts and snarky bumper stickers.   Some of the commentary associated with such discussions barely stops short of suggesting these people don’t really love their children for who they are.

And after months and years of reading such attacks disguised as “commentary” and “debate”, it has occurred to me that we are spending a great deal of our time teaching people that it is in their best interest to shut up.

After all, while many of us are confident in being vocal, I would  guess that the vast majority of people in our community are simply everyday people.  People who have no desire to control the parenting decisions of others.  People who do not purport to know definitively who is right in any of our controversies.  People who are simply trying to do what their instincts say is right regarding their own children.  And, like most folks, these everyday non-blog espousing parents have no desire to ignite a debate or have their emotions stomped into the ground.  Sheesh.  Parenting and advocating for a special needs child is hard enough without putting yourself out there like that.

So I find myself wondering why we, by attacking people whose approach to therapy and educational decisions for their children is different from our own, think we are somehow furthering the cause of autism?  A well-intentioned “Hey, you might want to check out this article that has some interesting things to say about blah blah blah” would be more beneficial, I think.  I know I’d be much more willing to hear another viewpoint expressed that way.

For, by jumping people for their thoughts and decisions about raising their autistic kids, all we are doing is silencing them.  We are discouraging them from sharing any more.  And we are teaching those not willing to endure the same attack that they should go someplace else.  Silencing their voices.  Problem is, I can think of a lot of disturbing examples throughout history when silence was encouraged of dissenters.  None of that turned out so well.

I worry about the degree of politically correct autism discussion pushed on us these days.  You can hardly turn around without offending someone in the ASD community.  I worry about the parents who feel ashamed for considering or trying a therapy that others don’t agree with.  Saying that you have concerns about an approach is one thing.  Suggesting that they are abusing or not loving their children is another.  I worry about those parents who might be afraid to express their genuine grief out of fear of not “embracing neurodiversity”.  I worry about the silence that will follow.  I want to hear all of our voices.  Because, if we already knew all of the answers, we wouldn’t need these discussions to begin with.

In the discouragement of telling the truth about our experiences,  I wonder if autism will be granted even greater powers of silence than it already has.

For autism has already silenced too many of our sons and daughters, brothers and sisters.

We must stop silencing each other.

If you liked this post, you might enjoy:

“This is MY Reality” by Sunday Stillwell.

 “Stirring Up a Hornet’s Nest:  Free Advice and the Vaccine Controversy” or “Reply to a Disgruntled Reader“.  

Or you might like (language alert!) this post by Jillsmo:  “Autism and Vaccines: My Opinion”.

Or even this post by From the Inside Looking In:  “Anti-That-Kind-of-Parent”.

Stirring Up a Hornet’s Nest: Free Advice and the Vaccine Controversy

It was inevitable.  You can’t blog about autism and not end up discussing the causes of autism at some point.

I really wasn’t going to enter the debate.  It has all been said.  By folks a lot more knowledgable on the subject than myself.  So, I really wasn’t planning to talk about it.

Except for the umpteen-zillionth well-meaning soul who suggested to me that my son’s ASD condition was caused solely by a vaccine.  Up until that one individual, I was tolerating it well.  Apparently, umpteen-zillion is one too many.

Do not misunderstand me.  I am not one of those people who believe that there is no vaccine/autism connection.  I do not believe in the concept of a “vaccine cult”.  I have read and researched the subject.  And I think that the case is most definitely not closed with regard to vaccines and autism.  So, no, I don’t think you guys are crazy one bit.  (Read Fourteen Studies, if you aren’t suspicious at all.)

My son has a pediatrician, a speech therapist, an occupational therapist, a physical therapist, and an infant child development specialist.  He also has a DAN doctor.  We haven’t abided by every suggested course of therapy he offers, but we have implemented several of them.  So we like to think of ourselves as open-minded, while not getting suckered into every quack-cure available.  Our approach to treating our son is that he is going to get both conventional and some unconventional treatment.  That way, we won’t wonder one day if something could have helped that we didn’t explore.

But let me tell you about my grandfather.  He would have been 102 years old this year.  This, of course, means that he would never have been diagnosed with ASD, and  it also means he wasn’t administered the current vaccination schedule as a child.

My grandfather was an intelligent man.  He worked as a warehouse superintendent for a large paper mill.  Being a warehouse manager is a little like being a librarian – except on a larger scale.  Things can get out of control inventory-wise, and my grandfather was well-known for being able to organize for optimum efficiency — and doing it with such precision that it didn’t earn him fans.  Making and keeping friends was simply not his strong suit.   He often said just the wrong thing.  My grandmother adored him, but everyone knew he wasn’t an easy man to live with.  He was very good with small children, always seeming to understand just how to talk to them.  I adored him when I was little, and he could do no wrong in my eyes.  My father also remembers his gentleness and kindness in his own early years.

But, as I grew older, I realized that he wasn’t the friendliest guy to everyone else.  I remember him opening a present on Christmas and asking point-blank, “What did you get me this for?”  He then made a 30-minute drive into town the next day to leave it on our doorstep to return it.  He was curt with salespeople and repairmen, and always seemed fixated on whatever was agitating him at the moment.  It was impossible for my grandmother to get a/c installed (in Florida) for 20 years because he was worried about who should do the installation and was “researching” it.  He also kept detailed notebooks about every set of winning Lotto numbers and was in the process of methodically working out “the system” he believed controlled it.   This man who found conversation difficult, socializing impossible, and was obsessive about details and numbers would, without doubt, have been diagnosed with Asperger’s today.

There are other family members who, though they have much greater social functioning, have their own quirks.  My father (who, interestingly, did not talk until after the age of 3), a highly intelligent man and an attorney, is one of the first people to tell you about his social peculiarities.  He has good friends who adore him, and almost everyone likes him as he is what is known as “a character”.  But he can be an odd duck and accepts it with good humor.  Bright lights annoy him, and he finds background noise and sudden loud noises intolerable.  Though he loves his grandchildren, he never leaves without mentioning how very loud an experience is visiting my home.  He is rarely insulted and often fails to notice subtle commentary directed at him.  And if you try to take a picture of the man, good luck.  Almost every photo I have of him, he is looking away.

According to my father, even my great-grandfather had some quirks.  He remembers hearing stories by local old folks about how my great-grandfather ran his business.  When he reached his quota for the day, he closed up shop and went home!  A true numbers guy.

I, too, have some quirks.  I have been a ridiculously picky eater all of my life.  Any piece of meat not perfectly lean, thoroughly cooked, and divested of its skin, gristle, and bone makes me gag.  I also abhor any kind of textural changes to food, especially fruit, and I get upset when my bread gets the least bit damp.  I am quite sensitive to sunlight and smells – which caused me to yak for the duration of both of my pregnancies.  When not concentrating on it, I often have difficulty maintaining eye contact in extended conversation, and can get quite agitated at background noise myself – almost to the point of anger and a desire to escape.  I have had a series of somewhat obsessive hobbies and interests through the years that I have eventually abandoned for the next new thing.  I also inherited our family’s legendary love for travel (even mentioned by ancestors)– a characteristic I have only recently learned is often found in persons with Asperger’s.  Apparently, many Aspies enjoy people watching in other cultures- presumably seeking to sort out the perplexing social nature of neurotypicals.

While both my father and I are, clearly, high functioning in terms of social skills and verbal ability (he an attorney, myself a teacher), we know we lean a bit into that spectrum as well.  Combined with two confirmed relatives with autism and now my soon-to-be-formally-diagnosed son, my family is eaten up with ASD.

The thing is, while three of us were vaccinated using the current protocol, the adults were not.  Certainly not my would-have-been-102-year-old grandfather.  Yet we are all to some degree on this spectrum.  So, I have a VERY hard time reconciling the theory that all of these cases of ASD are vaccine-related.  My best guess is that there is some genetic tendency to spectrum disorders and that there is some environmental trigger that is responsible for the current rise and severity of ASD children.

Clearly, ASD in some form has always existed.  Just look at the number of historical figures and geniuses that were late-talkers and socially awkward – while still putting forth world-renowned works of art, literature, music, and scientific advances.  I believe ASD has always been and always will be.  Recent brain studies of ASD spectrum people show marked differences in functioning.  Since most of the brain is formed before birth, I don’t believe this can be attributed solely to vaccination.

What I don’t understand is why we must take black or white stances on the issue of the causes of autism.  Search the internet on this subject and you will find either militant conspiracy theorists or condescending medical professionals.   Did it never occur to anyone that little in medicine or the human mind is absolute?  And why is it so hard to admit that we still know so little about ASD?  It is as if the government is terrified of admitting that sometimes good medicine can have bad side effects and anti-western medicine folks are terrified of admitting that, just maybe, some of it is simply in the DNA.  I realize that there are many who also think the truth lies somewhere in the middle, but, unfortunately, they aren’t the ones shouting from the rooftops, nor are they the ones I will inevitably bump into in the grocery store.

I don’t know the answer.

What I do know is that I worry I will lose my temper with the next person who laments that my child received vaccines.  I get frustrated every time someone tells me that DAN treatment will completely cure my son.  And I’m tired of being treated as though I’m stupid because I don’t buy the “case closed” argument that says autism is caused by pure genetic chance.  The truth is WE DON’T KNOW.  We are getting better ideas.  And it is entirely possible that we will ultimately discover it is caused by something altogether different.

But I do believe we will find the answer.  With one in 91 children affected by autism spectrum disorders, this country will inevitably wake up to this growing nightmare.  Economically, we can’t afford not to.  These children are young now, but one day they will be grown and many will require living assistance.  That will affect every taxpayer in the U.S.

In the meantime, well-intentioned people should consider dispensing with absolute certainties and free advice – especially if they are not personally affected by autism.  I assure you that, yes, ASD parents have heard it all.  I don’t know any one of us who hasn’t obsessively searched the internet for any and all therapies and information.  We shouldn’t have to defend what courses of treatment we have chosen to pursue for our children, though we might want to discuss how it is going.  We have enough problems struggling over the right thing to do without worrying about other people’s good opinions.  And even when we have decided, we still second guess ourselves and obsess.  Most people wouldn’t dream of interrogating a cancer patient about her treatment choices.  It would be nice if they wouldn’t do the same to parents of autistic children.

What we sure could use are hugs, friendship, and a genuine interest in our child and families.  Invitations to child-free get togethers, movies,  or a run for a mani-pedi.  What special-needs parents really need is support, not suggestions (unless asked, of course).

That’s something that all of our endless hours of searching, reading, and learning can’t provide — the truly needed benefit of simply spending time with a good friend and having someone take care of us, even for just a few minutes.

This guy said it best:

“When a friend is in trouble, don’t annoy him by asking if there is anything you can do. Think up something appropriate and do it.”
– Edgar Watson Howe

(Exiting, looking around nervously to see if someone is going to throw something at me and stepping down off my soapbox…)  :)

If you enjoyed this post, you might like (language alert!): Jillsmo’s “Autism and Vaccines:  My Opinion”.