Category Archives: My Soapbox (Shame on Somebody Somewhere)

Reflections Upon D-Day (Diagnosis Day)

A year ago, we took Callum to see a developmental pediatrician.  And, because some of his symptoms were somewhat atypical, the doctor said he was hoping he might just be delayed.  He felt there was a chance that it might not prove to be classical autism and asked us to return when our son turned three.  We continued speech, occupational, and physical therapy and waited it out.

During this time, I read.  And researched.  And analyzed.  And over overanalyzed.  I blogged.  And socially networked.  And I had built up in my mind the moment when we would finally receive a diagnosis.  I had envisioned a private room, numerous assessment papers, and difficult discussions of cognitive ability and prognosis.  I expected to have it really hit me on some deeper level that I couldn’t anticipate and to maybe break down.  I thought it would be the really big deal it has been for so many of my special needs parent friends.

So, yesterday, we drove an hour to the University of Florida, my mind drifting over different possible scenarios.  I thought we would have a long wait in the lobby.  But they called us back immediately.  I expected a dreary wait in the examining room.  But the doctor walked right in.  I was ready for him to pull out all of the various assessments from the private therapists, Early Steps, etc.  And I figured he would order up a full day of assessments at Shands.

Instead, he walked in, took one look at Callum stimming over a dangling cord, and said, “So, it doesn’t look like there has been a major change.  I was hoping it might go the other way.  But we are definitely looking at autistic disorder.”  He asked a bunch of questions about his behaviors and speech.  And he spent a little time interacting with Callum – asking him to draw, give him a high five, and to return his pen (of which he did all three).  He then told us to continue all of his therapies and handed us a brochure for a University of Florida training program for parents – Child Directed Interaction.  He suggested we contact the Gainesville CARD.  And he handed us a lab order for chromosomal testing.  And that was it.

Realizing he was intending to leave, I asked the question, “So is this paper a formal diagnosis?”  The doctor looked at me and said, “Well, he was diagnosed a year ago, but I was hoping he would go in the other direction.”

So, not only was our diagnosis uneventful – it, apparently, happened a year ago and no one told me.  No, really.

I suppose some might accuse me of not being terribly observant, but I submit that if someone had told me my son was formally diagnosed with autism a year ago – that I would have noticed.  My best guess is that it happened following our visit and after the doctor or whomever graded the parent questionnaire he had me fill out before leaving last year.  I realize it wouldn’t have made any difference in our day-to-day lives.  I’ve known since early on it was autism.  He has received therapies since the age of 19 months.  He has received the benefits of Early Steps and qualified for ESE Pre-K placement.   With the exception of possibly (but not terribly likely) receiving social security disability benefits and a tax break, nothing would be any different for him having that official label.

So, instead of experiencing a fresh wave of grief and anxiety or a surge of relief and renewed purpose, I was left feeling strangely blank and mildly disconcerted.   Like when you follow two characters throughout an entire romantic drama – only to be left with questions of whether or not they will really end up together.  It was anti-climactic, to be sure.

Except for the part where we left the doctor’s office to head over to Shands for chromosomal testing.  And after handing over our insurance information, we were denied.  The wonderful woman in the outpatient lab trying to get it authorized went above and beyond the call of duty.  She explained that this type of testing cannot be conducted in the lab they demanded we go to.  They demanded his primary care pediatrician see him instead.  She (and we) patiently explained the need for a specialist. They then demanded that the specialist call in the authorization.  The specialist demanded the pediatrician call it in.  The pediatrician’s office swore to call it in.  And then went to lunch.  We went to lunch.  We returned.  The pediatrician’s office then said it would be three days.  Then therapy called in the middle of all that and shared that Healthease had denied his therapies for the third week in a row and they would resubmit.

So, I discovered Children’s Medical Services across the hall.  Children’s Medical Services is a group of insurance programs for kids with special needs.  They were pressed for time, so the nice lady gave me a card with a phone number to call.  I started to get a little teary. So, the nice lady insisted someone who could help me come out front anyway.  And that lady turned out to be super kind and helped me to begin paperwork to switch him out of the awful state health insurance program he is in and into theirs.  And then she suggested that I go down the hall and meet with a social worker to find out about anything else I might need to know about.  And that guy was also awesome and directed us to some other resources.

(And all of these people making up the staff of the University of Florida at Shands Outpatient Lab, Children’s Medical Services branch, and Social Services branch restored my admittedly shaky faith in humanity.  So a big “Thank you” to them.  You folks rock.   And a loud “Shame on you!” to Healthease of Florida.  Like Aunt Em, I can’t say what I think of you.)

So on my personal D-Day, I am reminded of the truth about autism diagnosis.  The label allows you to approach,  but you still have to storm the beaches yourself.   You still have snipers raining fire upon you.  You will see and hurt for the casualties of those just like you, also navigating their way through their battles.  And, if you finally reach safety, you will look back at the devastation these battles have left behind and wonder.  Yet you will know that your child – and every child – are worth any sacrifice.

For in the immortal words of Winston Churchill, ” We shall fight…We shall never surrender.”

But first we need some snuggle time and to crawl in bed.  A good book.  A glass of wine.  And some peanut butter fudge.  Then, after a good night’s sleep, we shall commence fighting in the morning.  We’ve had a long day.

So, what was D-Day like for you?

If you liked this post, you might also enjoy: “So You Think Your Child Might Be Autistic” or “From the Rooftop: Autism Disclosure”.

Or you might enjoy this post about diagnosis from Tales from Tangerine: “A Diagnosis…Sort Of”.

Civility Is Simple — Not Simplistic: A Response

The Golden Rule: Simple, Ancient, and Effective.

From dictionary.com:
ci·vil·i·ty
noun, plural -ties.
1.courtesy; politeness.

2.a polite action or expression: an exchange of civilities.
3.Archaic . civilization; culture; good breeding.
Synonyms
1.  affability, amiability, manners, tact.

A few weeks ago, I wrote a post, “Silencing Ourselves: A Plea for Civility in the ASD Community“.  Shortly thereafter, Ali Dyer, Social Media Coordinator at Autism Speaks, wrote a response to my post, “‘Silencing Ourselves: A Plea for Civility in the ASD Community’ – A Sister’s Response” which was featured on the Autism Speaks Official Blog.  I read a comment on her post (and thereby mine) which has been bothering me.  And, while generally I do not take exception to honest criticism in blog posts, the tone and sentiments expressed in the somewhat critical response concern me.  And, although I do not wish to open the proverbial hornet’s nest, I feel the need to respond in kind.  Not because someone dared to disagree with me.  I’m not perfect.  It happens.  But because this discussion has broader implications for the general nature of discourse in the autism spectrum/special needs parenting community.  And, sadly, I don’t believe that the views expressed in the comment are hers alone.

The criticism focused on three issues: our (presumably both my and Ms. Dyer’s) use of non-people first terminology, an opinion of Ms. Dyer’s writing and the implications of such for her as a social media coordinator, and an opinion that my desire for civility in the autism spectrum community is simplistic and unrealistic.  I will address my concerns in this order.

In her comments, the respondent stated that our usage of non “people first” terminology “simply is not enlightened”.  Because I have shared my views on this subject in a previous post, “Reply to a Disgruntled Reader“, I will refrain from repeating myself ad nauseam.However, I will say this:  the statement, “People are not autistic.  Behaviors are” has become the rallying cry of those endorsing people-first language with regard to autism.  In my opinion, it is one of those things that sounds very nice and correct but, on further examination, isn’t the only lens by which to view the subject.  There are some perfectly nice, caring people out there who see it quite differently.  People who are no more insensitive than those who attempt to advance the “people first” movement.  People who see the use of the word “autistic” as more about embracing the whole self rather than as a dismissive label.  A friend of mine, “E”, in the autism blogosphere recently began writing her own blog,The Third Glance.  ”E” is a PH.D student ­ and an insightful thinker and writer.  She also happens to be autistic.  Here is what she has to say:

I am Autistic. I am a nerd. I am asexual. I think often times, what people’s objection to describing someone as “autistic” stems from, is their own personal, stereotyped version of “autism” (or how they believe the rest of the world views it, even if that is not their own personal view) – the negative horrible thing that it isn’t, but that (unfortunately) immediately comes to many people’s minds when they hear that word. And they don’t want their kid, or themselves, to be seen by that view, so they try to separate their child from the stigma. I TOTALLY understand that – you want people to see your child as the wonderful, kind, awesome person s/he is, and not by the awful assumptions that society makes that don’t accurately portray him/her. But by separating the person from the person’s existence, you are destroying the person inside. It’s not that when your child has a triumph it is in spite of the Autism, and when they have a setback it is because of the Autism, but rather, that when your child has a triumph, it, too, is due to his or her Autistic mind, figuring out and processing the world and understanding and acting in a way that you approve or appreciate. As another FANTASTIC Autistic blogger, AutisticSpeaks (http://autisticspeaks.wordpress.com/) says, “Not despite autism, but because of it”.

But here’s the thing. Everything about me stems from being Autistic. The way I think, feel, and interact with the world. The fact that I’m a PhD student, AND the fact that I stim in my office and am pretty terrible at socializing with my age group (who, by the way, are all undergraduates). There’s nothing about me that is a “person first” and “autistic” second. To be Autistic IS TO BE A UNIQUE HUMAN, whose brain works a little differently from most other humans. I’m also asexual. I am not “a person with asexuality”. Nor is any gay person “a person with gayness”. That trait, asexuality, is as much a part of me as my Autism, and has shaped my thoughts, ideas, and the way I interact with the world as well. The two are undoubtedly linked (along with all of my other traits that make me myself – Autism =/= Asexual and vice versa, it just happens to be the case for me), but I digress…

To ME (and I stress that this is MY opinion, not anyone else’s, though I’m sure there are people who agree, or have similar feelings, I only speak for myself): the phrase “person with Autism” suggests that Autism makes me less than human. I am NOT less than human. I’m not a person who is less than other humans because I’m afflicted by a terrible disease. Sure, being Autistic means it’s harder for me to do some things than it is for you. But it’s also easier for me to do many things, things that I find to be of great value and absolutely love to do – things that make me, ME. Take away my Autism, and you take away the stigma, sure, but you also take away everything in my life that makes me into the person I am. And that is why I, personally, identify as “an Autistic person”, not a “person with Autism”.

Also, I did just want to make it clear that I am *not* looking for a fight here – I’m actually simply responding with how I personally feel. That doesn’t negate anyone else’s opinion who happens to feel differently. Individuals who prefer to identify as “people with Autism” deserve just as much respect of their views. I would never force them to identify as “Autistic people”, and I expect the same to myself. But as an Autistic person who (sometimes) has the means of communication to express my views and opinions, I simply wanted to speak to that particular issue, as it is very relevant to my life.

I think that those who believe that the “people first” view of autism terminology is a closed case might be surprised to find that there are a lot of decent people out there who disagree .  And, while – like “E” – I do not think others will or even should see it the same way, I hope that those of us who see it differently will not continually be accused of being insensitive or unenlightened.  It is simply a matter of perspective.

Regarding her post, the response to Ms. Dyer stated:
     Your post was touching in what you shared about your brother ­ and we all have touching stories of sacrifice to share ­ but you did not really not address the blog post you referred to other than the autistic/autism issue. You kind of side-stepped that and told your own story. Like I said, your story was meaningful, but that was not the promise of your post title. As a social media manager, you know focus is important in blogging and you have to deliver on the promise of a subject line or title.

A blog – by its very definition – is a personal journal.  A blog post contains the thoughts, feelings, and experiences of its writer.  Ms. Dyer, though she works as a social media manager for Autism Speaks, is allowed to have her own thoughts and responses to what she reads.  The biographical information stated that Ms. Dyer was functioning as a guest blogger.  She was not participating in a structured debate or even writing in her official capacity as an employee of Autism Speaks.  To chide her with regard to her professional status seems disingenuous to me.  It appears to me that the true objection is to her agreement of ideas expressed in my post rather than what was perceived by the respondent to be her improperly focused blog post.  I detected annoyance with her personal story (“and we all have touching stories of sacrifice to share”).  My question is…why?  Because she does not share the same opinions as the respondent, does that make her personal experience somehow irrelevant or redundant in the autism blogosphere?  While I sincerely hope not, it has been my experience that it does.  

I do not personally know Ms. Dyer, nor have I interacted with her online in any way other than a compliment to her post, thanking her for linking to mine.  And, while I’m sure that she is a perfectly nice person, my intention is not to jump to specifically her defense. My concern is what I perceive to be an intolerant environment in the ASD community.  Intolerant in that there appears to be only one accepted way of seeing our issues.  Intolerant in that there appears to be a greater concern for correcting others’ perceived verbal missteps than for engaging in a useful sharing of resources and information.  In the past few months, I have seen a ratcheting up of personal political beliefs interspersed with autism advocacy to the point of implying that those who have a different political opinion are somehow less worthy as human beings — and possibly not as deserving of having a voice in our community.  It begs the question:  Should an individual’s liberalism, conservatism, religiosity or lack thereof be cause for dismissal from the autism community?  Because, as I understand it, we have a common cause – the educational, medical, and social well-being of children and adult individuals with autism spectrum disorders and their families.  That’s why we’re all here, right?

I am not suggesting that individuals in the ASD community should not be allowed to express their political views or endorse policies and legislation that benefit the same . I’m a writer, a teacher, and a librarian.  This makes me quite fond of the First Amendment.  What I am not so fond of is people implying that simply holding a differing opinion should negate the respectful treatment of those who disagree. For I happen to believe that both politically liberal and conservative parents, religious and non-religious parents, and biomedical enthusiasts and advocates of standard methods of autism treatment all deserve to be treated respectfully – even during inevitable and sometimes necessary times of disagreement.  It is one thing to attack a viewpoint.  It is quite another to attack an individual holding it. 

Perhaps it is naive of me to think there is enough room in our community for differing perspectives.  If it is, then I prefer naiveté over cynicism.

And my supposed naiveté is truly the main focus of the respondent’s displeasure.  She compared my post to the oft-derided wail of Rodney King’s “Why can’t we all just get along?”  She stated:

…I think it’s too simple to just wonder why it [division in the autism community] exists and hope the band-aid of good will will cover it.  There are very good reasons for the visceral way people respond to differences that bear examining.  First of all, we can’t just all get along because the autism community is VERY diverse.  Our needs are different.  Our belief systems are different.  There is no big umbrella covering us all.”

I am aware that we are a diverse community with diverse needs.  Every community is.  But she mistook what I requested from our community – civility – and confused it with a request for uniformity.  She demonstrated this by referring to my objection to cruelty and incivility as an objection to “division in the autism community”.  At no point in my post did I call for a hive mind mentality for the autism community.  I called for civility.  Simple human courtesy and a respectful approach to those with whom one disagrees.

We spend a lot of time in the autism community discussing bullying and its effects upon our children.  We push for strong anti-bullying measures in our schools.  And we discuss at length the need for tolerance and diversity.  Yet, as a community, I don’t think I am overstepping in saying that we don’t practice what we preach.

I am a blogger.  A few months ago, I deliberately created a blog account and  set up social networking accounts to network and market it.  Clearly, I am fair game for those who wish to attack my views.  I put myself out there, willingly engaged in public debate, and comment frequently on others who choose to do the same.  And while mean comments hurt me as much as anyone else, it is hard to argue that I didn’t know exactly what I was signing up for.

Contrast me with an innocent parent who unwittingly comes across an autism blog or forum, asking for advice or sharing his experience.  That parent mentions ABA therapy or gluten-free cookie recipes or the like and all hell breaks loose.  Suddenly, this parent is accused of being stupid, a cult member, subjecting his beloved child to “what amounts to dog training”, etc.  And all that parent sought to do was find others like him, parents doing the best they can to provide for the children they so desperately love.  And maybe his choices aren’t yours.  But I happen to find little difference between the snarky self-satisfaction of the “cool kids” of ASD parenting, sitting at the “cool table” in the autism forum, tossing out verbal jabs and raising an eyebrow at the hapless newcomer who dares to approach un-vetted.  I don’t know what others call it, but where I come from it’s called bullying.  And I don’t like bullying in any of its forms.

Nor do I understand the purpose of it in our community.  Even for those who hold the most passionate views for or against a particular course of therapy, treatment, or educational approach, I would think that the goal would be to enlighten others to one’s point of view and encourage them to adopt it.  If one instead chooses to insult, demean, or imply a lesser degree of parental dedication, all he will accomplish is the alienation of yet another possible convert to his position.  This seems contradictory to one’s purpose, does it not?  At least one would hope that purpose was a well-intentioned one. If a mother enters an autism forum or blog commentary seeking information on allergy testing for biomedical treatment, wouldn’t one be more likely to sway her to his side by politely sharing a link about the efficacy of such testing than accusing her of stupidity and child torture?  Rudeness is unmistakable – in person and online.  I submit that there are a lot of obnoxious online personas who would never dream of conducting themselves similarly in person.  And I don’t know about everyone else, but – once I identify an individual as rude – I no longer seek her counsel.  In my way of thinking, incivility is not only unenlightened, it is, quite simply, ineffective.

No, uniformity is not what I’m calling for.  I am aware that there are changes that need to be made in education, with regard to insurance, in legislation, and public awareness.  I certainly think that we should all be free and encouraged to opine to our heart’s content.  To bring about needed reform and to push for what won’t happen without our insistence.  But I do not believe that other parents of autistic children are our adversaries.  I don’t believe that attacking one another for our approaches to treatment, therapy, education – and even political beliefs – is acceptable or noble in any way.

For, at the end of the day, yes, we are all under the same umbrella.  We are under the umbrella of unconditional love for our children, worry for their futures, fear for the day that will come when we are no longer around to advocate for and protect them, and the haunting fear that perhaps the choices we have made for them weren’t the best.  And, though – as the respondent pointed out – our individual struggles and journeys may be markedly different, we are all really doing the best we can.  We have much to share with one another.  Many worthwhile stories to be told.  And, in the sharing of our individual experiences and viewpoints, we have much to gain in civility –and little to nothing in antagonism and cruelty.  The Golden Rule has existed since antiquity – in every culture- – in some form for a reason.  It works.  And it always will.

“Civility costs nothing, and buys everything.”
Mary Wortley Montagu

If you liked this post, you might also enjoy “The Third Glance” by “E”.  

*The comments cited here follow Ali Dyer’s post, in the “Comments” section – dated March 6th.

Speak No Evil: 8 Things Family, Friends, and Complete Strangers Shouldn’t Say to Parents of Autistic Kids

Nosiness isn't any more attractive in you.

1.  “Are you planning to have any more children?”  Hmm.  Are you planning to have sex tonight?  Why people ask such personal questions of strangers or acquaintances is unknown to me.  But even if you are acquainted well enough with someone to discuss future children, think about it before asking the parents of an autistic child.  Lightning can strike in the same place twice.  This is a deeply personal issue for some of us.  Statistically, we are more likely than not to have any future children not affected by ASD.  But the risk is higher.  And the ASD affecting another child could be more severe.  Yet, we may want our children to have siblings.  We may want more children to love.  We may always feel the loss of a child we had expected to one day have but choose not to after considerable thought.  Parents of ASD kids do not need your opinion on this issue – unless we ask for it.  Besides, we happen to love our ASD kids and may not find them quite the tragedy some would have us believe.

Moving in with us? Then, no, free advice is unwelcome.

2.  “What are you going to do to about such and such behavior of his?”  Well, are you referring to stimming behaviors?  Because he can’t stop those behaviors any more than breathing.  It’s who he is.  Stimming fulfills a need.  If the stimming behavior is harmful or dangerous, then that obviously needs to be addressed and replaced with a safer one.  But some kind of stimming will happen no matter what, if the child needs it.  If you are asking about his refusal to speak, socialize, or observe social conventions, then your question is a loaded one.  One that is answerable only by the child’s ASD severity, temperament, and possibly years of intervention.  Unless you plan to quit your job, obtain a degree in behavior analysis, sell your home and move in to become a permanent ABA coach, it’s best to avoid leading questions and insinuations such as this one.  With all due respect, you may not have all the information you need to discuss or judge this.

"As long as I'm living, my baby you'll be." - from Love You Forever

3.  “She is so lucky that you love her so much and that she has you for a parent.”  Please take a moment and think about what you are suggesting.  Don’t all children deserve the love of their parents?  If a child – through no fault of their own – is born with some physical or mental imperfection, should she have to accept a reduced level of parental love and pride?  Children are owed love, pride, and affection by their very birth — not luck.  If you wish to dole out compliments, why not simply tell us how cute or sweet our kids are or that you think we are good moms and dads?  That works for parents of all kids.

Our babies are just as precious to us -- no matter what side of the vaccination debate we take.

4.  “Did you vaccinate your child?”  The very fact that you would ask this question means that you are divided into one of two very opinionated camps.  The first being the Vaccinations-Are-the-Sole-Sause-of-Autism-and-What-a-Shame-You-Signed-Off-to-Do-This-Thereby-Causing-Your-Own-Child’s-Autism.  The second being the I-Hope-You-Aren’t-Some-Stupid-Whacko-Who-Is-So-Irresponsible-as-to-Not-Protect-Your-Own-Child-from-Disease-Therefore-You-Shouldn’t-Be-Allowed-to-Even-Be-a-Parent.  Parents of autistic kids get jumped all the time with this question.  Don’t ask it.  You force us to either confront our own regrets or justify our choices to a disapproving audience.  Both scenarios stink.

If there really was an instant cure for autism, don't you think it would have actually made the evening news? The polio vaccine certainly did.

5.  “You should go to such and such a doctor or try this who/what CURED some Random Person I Read About in a Magazine’s kid.”   Even supporters of DAN treatment and dietary intervention (GFCF), don’t usually claim a total cure.  After all, a total cure would mean the dietary intervention is no longer necessary.  Instead, some parents have reported improvements in their children’s symptoms and interaction.  Some significant improvements.  And some non-existent ones.  Many of us have tried it and abandoned it due to lack of results.  Many of us support biomedical treatment and are happy with the results. Some of us have tried other regimens and therapies with varying results.  Again, you force the parent into justifying their choices.  I promise you – promise you – we’ve all heard of biomedical and other treatments for autism.   And made our decisions on the issue based upon our own research and instincts — long before you read that magazine article or talked to your friend’s cousin twice removed.

Would that we all could see into the future...

6.  “When is he going to talk?  Will she be able to read?  Will he be self-sufficient?  Will she ever be able to marry?”  Honestly, we don’t know.  Autistic kids do things on their own timetables, sometimes years after their typical peers.  Some will go on to college and raising families.  Some will live on their own with minimal assistance.  Some will require life-long care.  These are the questions that haunt parents of autistic children.  These are the questions that wake us up at night and steal joy from the here and now.  Please don’t remind us of our worries.  It serves no purpose to be reminded of what we cannot control.  Look inside your heart and consider your purpose in asking such questions.  Curiosity isn’t a good justification.  Instead, simply ask how our children are doing, though you might get a longer answer than you were hoping for.  If things are looking up, you can be assured we’ll enthusiastically brag about it.  If they aren’t, you won’t have asked us questions we cannot answer.

No. I promise you. No matter what, you could and you would.

7.  “I couldn’t do what you do.  I could never handle it.  God gave you this child for a reason.”  I know you mean well.  But, really, if your child had been born with physical or mental challenges, would you have abandoned him?  Of course not.  We didn’t volunteer for this, nor did we volunteer our child for the difficulties he faces.  And some of us take exception to the idea that God did this to any child.  I don’t think the suggestion that God inflicts any difficulty or malady on defenseless children speaks too well for Him, does it?  Autism happens.  It happens to children.  And it happens to the parents who love them.  You would have loved your child just as much had it happened to you.  If you want to tell me you think I’m doing a great job,  thanks for the encouragement.  But if you convince me that you wouldn’t do the same for your own child, then I don’t think I would like you very much.  And I wouldn’t believe you anyway.  I think you would walk through the very same fire for your precious child as I would for mine.  Really.  Have a little more faith in the power of love.

If your expression resembles this when speaking to a parent of an autistic child, go someplace else until you can control it. Really.

8.  The Look of Tragedy.  Believe it or not, the Look of Tragedy is a statement in itself.  You might think that your expression of sadness and devastation isn’t obvious, but it is.  If you are overwhelmed with sadness for us or our children, just wipe that expression right off your face.  Why?  Because it hurts.  Practice it in the mirror if necessary.  But the Look of Tragedy is the worst thing to say of all.  It says that someone has looked at our situation and sees it as hopeless.  Trust me, hope is a very precious thing for special needs families.  Please don’t endanger ours.

“You people are awfully sensitive.  So what can I say?”  We know you probably mean well.  But sometimes the thoughts we don’t want others to hear come through loud and clear in the things we say.  When people or their loved ones have obvious physical or mental differences, they hear the same thoughtless comments repeated to them for years.   This can make you overly sensitive to be sure.  However, I firmly believe that most people are good and don’t want to be hurtful to others.  I believe that, if shown how a simple statement can be needlessly upsetting to others, that most people will stop saying it.

Here are some things you can safely say:

“I love you.”

“How are you?  How is your family?”

“Is there something I could do to help?  How about if I….”

“You are a great mom (dad).”

You really can’t go wrong with these.  With any parent of any child.  🙂

If you enjoyed this post, you might also like:  “Dear Shopper Staring at My Child Having a Meltdown in the Grocery Store” or “So You’re Wondering If Your Child Might Be Autistic”.

You might also enjoy:  “What to Say to the Parents of a Baby with Down Syndrome: Dos and Don’ts”.  

A Syllogism: Some Autistic People Really Are Jerks

Faulty Syllogism

Note:  I wrote this post in February of 2012.  The individual I refer to in this post is a person I know in my day-to-day brick and mortar life and not in the autism blogosphere. I re-posted this piece recently in protest of the idea that autism excuses unkind behavior.  

-Leigh Merryday, January 2013 

I can’t believe I’m actually going to say this.  I find myself thinking about syllogisms today.  Those of you who endured Logic 101 should remember these.

(Logic.  Is it a math?  Is it a philosophy?  Nobody but this guy seems to know.)

Syllogisms go something like this:  All cats have four legs.  A table has four legs.  Therefore, all cats are tables.  This is a false syllogism, in case you haven’t already guessed.  In Logic 101, cats can actually be tables.  But only in a correct syllogism.

I loved this class, mainly because I got math credit for it.  A math class that involved creative and persuasive writing.  I loved being able to ignore the words while conclusively proving some silly arguments.  The nice thing about logic is that you can whip out a Venn diagram and visually prove or disprove an argument-including some pretty sophisticated ones.

And logic did teach me something.  Namely, that we have to be careful about black and white, part or whole kinds of declarations.  It’s quite easy to reach the wrong conclusions based upon nothing but personal observation and well-intentioned generalizations.

We do this a lot with regard to autism.  You know.  Autistic people having superpowers of detail and mathematical genius.  Persons with ASD not being able to maintain friendships or show affection.  Autistic people having no sense of humor.  Etc., etc.

These are annoying stereotypes, to be sure.  As parents of ASD kids, we find ourselves constantly having to correct misconceptions about autism.  And, often, we find ourselves annoyed with the generalizations of others.

So, then – I ask myself – why are we guilty of doing this ourselves?

I’m going to go ahead and call myself out here.  Because I have done exactly what I’m referring to — making generalizations and aiding stereotypes about autism.  I have made statements to others along the lines of “Autistic people don’t lie.”  I have shared mistaken beliefs about autistics not being overly concerned with what other people think.   I have compared my son to an angel, pointing out a lack of malice that seems to accompany autism.  And I have not pushed hard enough with autistic kids I know – believing that little in their socially inappropriate behavior was attributable to any fault of their own and seeking to correct other people’s reactions instead.   No, I didn’t view autism as a helpless state, but I acknowledge not having done some of the kids any favors by being overprotective and coddling.

Why am I talking about this?  Well, I came across an autistic person who happens to be a real jerk.  This individual makes obnoxious comments about others.  With a malicious gleam in his eye.  And thinks it is hilarious to be crude and disgusting to upset others.  No, I don’t mean inadvertently.  I mean he really thinks it’s funny.  He is very smart, and highly verbal.  And I found myself trying to be all kinds of sensitive to his differences.  I kept trying to justify his rude and deliberate behavior as being manifestations of autistic traits.  I kept getting indignantly angry inside at anyone not understanding what drove his behaviors.

And then I had an epiphany.  I was thinking about my son and what a calm, laid-back little fellow he is.  I have always noticed how much my daughter takes after my husband in her high-energy personality and how much my son is more like my side of the family — uber-mellow.  I have been sharing my analogy of analyzing his behaviors – the three sets of glasses – with others for a while as well.  Yet, even with this “clarity”, I still failed to make the same leap with other people with autism.  I still failed to realize that some behaviors of autistic persons have nothing to do with their autism whatsoever.  For even though they have autism, they still have personality elements that are theirs regardless of ASD.  And then I realized.  The individual I referenced would still be a complete jerk even without his autism.  Autism does not negate the natural personality, nor does it blanket the personality with complete goodness.  And, I, for all my repeated standing on my autism soapbox – somehow fell into the stereotyping trap.

I forgot that stereotypes are often based upon partial truths.  I’m from the South.  We abhor stereotypes of us being quirky, ignorant, and intolerant.  Yet, we do eat some strange things down here.  We are a bit overly friendly and take too much time chit-chatting to accomplish the least little thing.  And many of us are so thoroughly pleased with our location that we have little desire to expand our horizons and knowledge of others.  (Some of us – not me.  I love to travel.  Feel free to invite me on your European vacation any time.  I’m available.)

Does this make stereotypes okay?  Of course not.  But, as with logic, you have to make a conscious effort to really look at your argument and determine if it’s valid.  In logic and life it is all too easy to get confused by the “alls”, the “somes”, and the “nones”.  Very little in life is black and white or any kind of absolute.

Yes, it is true that persons with ASDs are often brutally honest, seeing little purpose in lying to protect social constructs some of them don’t understand.  This turns into “wisdom” such as, “An autistic person will never lie.”  Hence, a jump from a frequent – not absolute – quality to a stereotype.  An easy thing to do even for the well-intentioned.  (Take it from someone who has worked with thousands of middle schoolers comprising all sorts of brain wiring.  They can lie.)

And here’s the thing.  It is an insult to individuals with ASD.  If we are going to ask the world to treat people with special needs as individuals, then we must be willing to see them as such.  Individuals with strengths.  Individuals with weaknesses.  And individuals who are sometimes thoroughly unlikable. When we reduce persons with autism spectrum disorders into stereotypes, we place limitations on them.  In our attempt to defend and portray them positively, we become guilty of the very same prejudice.  We are so fond in the special needs community of saying that our children’s disabilities don’t define them.  And then we turn around and call them “angels”.  By calling them “angels”, we have defined them.  Once we have defined a person, we tend to be inflexible about expanding our definitions.  This is a dangerous thing to do when raising, treating, or influencing special needs kids.  Because, maybe, just maybe, they might be capable of more than what fits our definition.

So, with thanks to a complete jerk, I have learned a lesson.  Instead of spending my time further professing my son’s angelic qualities, I plan to focus on teaching him to be a good  and well-mannered person.  Yes, it was in my plans all along, but I found myself making excuses for him and others like him.  There is a fine line between noting the unique characteristics of autism and making excuses.  One is helpful, and the other is not. I am going to have to do this better. Because, one day, I don’t want anyone to have any epiphanies about him.

Here is a syllogism that works:

All human beings are unique persons with both positive and negative qualities.

All persons with autism are human beings.

Therefore all persons with autism are unique persons with both positive and negative qualities.

See Professor What’s-Your-Name?  I did learn something in your class.  Funny that the test didn’t come for 20 years.

We Don’t Talk No Baby Talk Round Here!

Do you remember the days when people spent more time raising their own children than telling other people how to raise theirs?  When no one particularly cared what brand of baby bottles you were using, whether or not you breastfed a respectable period of time, what philosophy of child-rearing you subscribe to, or how much TV you allow your kids to watch?  Yes, I know that everybody has always had an opinion.  That certainly hasn’t changed.  But everyone didn’t seem to be quite so determined fifty years ago to impose it on others.

I look at blog posts, education journals, and parenting articles and I see a lot of highly vocal parental pride.

We are believers in attachment parenting.”

We share a ‘family bed.'”

“We live an organic lifestyle.'”

“We breastfed exclusively for two years.”

Please do not misunderstand me.  I have no contempt whatsoever for these parenting styles and practices.  And I’m all for people raising their children with thought and a deliberate attention to their children’s needs.  It’s the tone of moral superiority some proponents of various parenting theories get that unnerves me.

I came across one such sound bite the other night.  Actor Neil Patrick Harris was doing the obligatory parental bragging about his twins and boasted that his family has a “no baby talk” policy.

Now when I say I’m annoyed with this, please do not interpret that as me being all kinds of upset with Neil Patrick Harris.  He isn’t the first person to say it, and he is in all likelihood a perfectly nice man who clearly adores his children.  He simply repeated a phrase that is echoed by many parents –some of whom are excessively confident in their child-rearing convictions.  I’ve been guilty of it too, so let’s not run out and throw stones.  We’re none of us perfect — which is precisely my motivation for writing this.

As a teacher and a parent of both a highly verbal, early talking child and a child with an autism spectrum disorder with severe language delays, it annoys me when people self-righteously proclaim they “don’t speak baby talk” to their children or that their children are so verbal now because they didn’t then. Language acquisition is so much more complex than that.  Children thrive the more they are spoken to and interacted with period, no matter what the language or style of speaking.  There are behavioral studies in linguistics that demonstrate high-pitched speech toward infants is normal across most cultures.  It appears to be somewhat instinctive.  And, really, there are an awful lot of brilliant and articulate men and women throughout history whose mothers and fathers spoke sing-song silliness to their beloved babies.

Neil Patrick Harris obviously was not discussing autism or special needs conditions.  Nor are most of the “no baby talk” proponents.  But when they make these statements,they are implying that baby talk is somehow harmful to typical childrens’ language development.   Parents whose children are language delayed or simply not as impressive as their more precocious peers, have now been put on notice that they are somehow to blame for this.

Ditto for TV watching.  Yes, yes, I know all about this debate as well and have read the same studies as you have.  And, certainly, children are much better off running around outside making mud pies than watching cartoons.  However, I do not buy the argument that children who’ve seen a little television are miles behind in their development.  I – and most of my friends – grew up watching an awful lot of Sesame Street, Mister Rogers, The Electric Company, and so forth.  In the evenings, I loved The Dukes of Hazard and Charlie’s Angels.  Despite my obviously intellectually deficient childhood,  not only do I know how to wield a library card, I also managed to graduate college.  So I don’t buy the “developmental delays are caused by watching too much television” argument either.  The same thing goes for children who were bottle fed, made to sleep in their own beds, or given processed food once in a while.

When people have misconceptions about the causes of developmental delays (or the lack of excessive genius even), I get tense.  And my opinion itches to be set free.  Because having it implied that you are to blame for a child’s delays hurts – and hurts needlessly.  When you say to a parent of a child struggling developmentally that they should start or stop doing some particular thing, you are possibly coming at someone who lives with self-doubt every day.  We all wonder what we could have done or could do better.  We question our decisions.    And some may wonder if it really was Yo Gabba Gabba that caused their child’s autism after all.  (For the record?  It wasn’t.)  The truth is that, with the exception of severe neglect and malnutrition,  most developmental delays have a physiological or genetic cause.  Despite the abundance of information proving that, people still feel free to share their “expertise” with hapless parents everywhere.

Having a developmentally delayed child is much like standing in dirt crossroad in the middle of nowhere.  The right path is not clearly marked.  We try to peek a bit down every road to determine the best one to take.  There are few road signs and no mile markers. You set off down the road you have carefully chosen.  You hear the people off in the distance who took other paths.  Some of them – whose proximity you can’t quite determine – are reporting how terrible their journeys are.  Some of them are joyfully shouting how pleased they are with theirs.  You can’t tell who is closer or farther away.  With each successive voice added, you are left standing alone on the road trying to determine if you should begin making your way back to choose another.  You are left amidst a cacophony of voices shouting at you to head in their direction.  But, in the end, you are still standing on that road all alone, tightly holding the hand of your child while trying to appear confident.   It’s a frightening and lonely feeling.  One no parent will ever forget.

And the thoughtless comments and boasting of others can take you right back to that road in that moment of indecision.

Here’s what we know for certain about raising children:

1.  They need to know they are loved and valued.

2.  They need to be protected from illness and harm.

3.  They need clothing, nourishing food, and shelter.

4.  They need an appropriate education.

5.  They need opportunities to play and safely explore their world.

That’s about it.  It doesn’t matter what race, religion, or tribe you hail from, this is what you need to grow into a healthy, well-adjusted adult.  And I just want to take a moment to say to all of the parents out there whose children are receiving these five basic things:   You are a good mom.  You are a good dad.  Your children are who they were meant to be all along.  You’re doing a good job — not matter who is suggesting otherwise.

And I’m going to try to say it to myself more often – the me who worries, overanalyzes, and doubts.  The me who believes it easily of others but finds it harder to believe it of myself.   For, like all of you, I’m really doing the best I can.

“In spite of the six thousand manuals on child raising in the bookstores, child raising is still a dark continent and no one really knows anything.  You just need a lot of love and luck – and, of course, courage.”  ~Bill Cosby, Fatherhood, 1986

So, what annoying things have been suggested to you for better raising your special needs child?

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”.

Turns Out, It’s a Small World After All

When I made the decision just a few short weeks ago to start writing this blog, it was partly because I felt isolated.  We do not have an active support group for parents of autistic children in this county, or any active support group for special needs parents of any kind for that matter.  I knew that there were other parents of autistic and Asperger’s children in the school system, but – because of student privacy issues – also knew that I cannot contact these parents out of the blue to ask them to to join a support group.  So, with the exception of one other set of parents that I knew, whose ASD child is several years older than my own, I felt rather singular.

With the WordPress.com address in hand, I set out to make connections that I didn’t believe I could find here.  And, boy, did I find connections.  Suddenly, I am corresponding with people from Australia, Columbia, England, Vietnam, South Africa, and more.  I have met parents of grown children who have been where I am now.  Parents who amaze me with the ability to juggle two, three, four, or more ASD kids within just one household.  And parents who are right where I am now – just beginning, with way more questions than answers.

So, I find it somewhat ironic that, in my effort to explore the blogosphere and world for people like me, I ended up coming across one right here in my small town.  Earlier this week, while sitting in a waiting room, a woman whom I was chatting with noticed my new necklace pendant.  My father gave me a silver puzzle piece pendant for Christmas.  When I began to talk a little bit about my son, she told me she had suspected so because of the puzzle symbol.  And as soon as I began to share with her that I write a blog about it and have found this wonderful community of people like us out there, she began thanking God – talking about how alone she had been feeling all this time.  I gave her my blog address and asked her to please contact me on it and that, maybe, we could find a few other local people to start a support group.

She began to tell me about her child, her struggles to get anyone to take her seriously, and how, because of lack of understanding in her family, she has been keeping the diagnosis a secret.  Here she is, in the very same small town, feeling isolated because of a lack of understanding and a lack of parent support and community education about ASD.  This tells me that, despite the wonderful progress being made, we simply haven’t come anywhere near far enough.  For, if 1 out 0f 91 children had a particular disease, you could bet there would be a lot more governmental and public attention – as well as enormous community support for its victims.  But take a developmental disorder that makes some people feel uncomfortable – or inexplicably embarrassed – and you end up with all these little families like islands unto themselves.  My heart broke for her and for her obvious desperation and fear.

I’ve been catching a little local displeasure this week.  And, let me be the first to say that I am new at this.  Putting myself and my children out there for the world to see has been a new experience to say the least.  Perhaps I didn’t do it so well.  Perhaps I should have used an alias.  Regardless, I’ve made the bed, and it’s a little late to undo it.  I have been questioned as to whether or not it was the right thing to do to share my children’s lives.  I have upset people who feel that I have hinted connections to them to via this blog.  For that, I’m sorry.  When I began this blog, I thought that I might get 100-200 people who might follow it and be a source of shared experiences for me.  I certainly didn’t expect to go viral.  I didn’t plan for anyone local to recognize clues to any real people as I didn’t really think anyone local would be taking note of an obscure parent autism blog to begin with.  Obviously, I am going to have to work on making some actual experiences a little more hypothetical and not alienating real people, for that is certainly not my intention.  Lesson learned.

But I have learned something else that I wish I hadn’t.  People clearly do not want to talk about or be associated with autism.  For, if a child were stricken with a life-limiting disease, there would be dozens of Facebook fan pages popping up.  There would be fundraisers and a local biker group doing a benefit ride and charity concerts.  And – no one- and I mean NO ONE would be the least bit upset to be connected to it in any way possible, would they?

No, autism is not a disease.  It is not contagious.  It is not even a tragedy in its higher functioning forms.  But, in its severe forms, it darn sure can be life-limiting.  It can rob our children of communication.  Their parents might not ever, ever, hear the words “I love you” from their children.   It can rob our children of friendships, because some cannot connect to others.  It can rob them of an education, because they might not be able to learn the way they need to.  It can rob them of affection, because they might not be able to withstand the physical discomfort of their own mother’s touch.  It can rob them of dignity, because they might not be able to be toilet trained or be self-sufficient in adulthood.

If that isn’t life-limiting, I don’t know what is.

I’m angry right now for every mother and father I’ve heard from who are facing the challenge of autism alone.  I’m angry at their families, who persist in convincing them they have something to be ashamed about.  I’m angry at school districts around this country who are ignoring the fact that so very many children in its classrooms are affected by a condition that needs specific, research-based interventions to help them reach their potential.  There are districts around this country without a single expert in autism even advising them, let alone teaching and providing therapy to their students.  I’m not getting political and making a plea for more money.  I’m suggesting we take a good look at the money we are already spending.

And I’m angry for this one loving mother, feeling alone and powerless in a family and world that sends messages to her to keep silent and, thereby, ashamed.  I’m angry that she has to listen to child care providers who suggested, through their ignorance, that autism is synonymous with mental retardation.  I’m angry that the only person she feels she can connect to is a complete stranger in a waiting room.  People, I think we can do better than that.

So, I may not be doing this right.  I may be stupid in my belief that transparency is the way to de-stigmatize ASD. I may have made a mistake putting our lives out on display.  But I can’t help but believe that the more people who are out there telling the world about their children and shouting the need for autism awareness and support will one day mean there will be fewer families enduring this alone.  And fewer children trying to stumble their way alone through a world that, with just a little more awareness and a deliberate approach to educating autistic children, could help them to realize the futures and dreams that all people share for their children and for themselves.

When are we, our families, our communities, our school systems, and our country going to stand up and admit that the Emperor is not wearing any clothes?

Dear Shopper Staring at My Child Having a Meltdown in the Grocery Store

Dear Shopper,

Yes, I know.  I’m well aware that my child is screaming.  Not just a regular scream, but an ear-piercing, sanity-shattering screech.  Even if I wasn’t seeing and hearing it, I would know by the expression on your face.

Clearly, you have raised your children better than me.

That is what you were wanting to say, right?   There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion  or better yet — give knowing looks to other shoppers passing by.

I have no doubt that you have wonderful, well-behaved children.  Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children.  Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.

And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives.  You are, in all probability, a good person.  You probably don’t mean any harm.

This is what complicates what I want to say to you.  Because, despite my anger towards you, I happen to have been raised well too.  I don’t want to be ugly, even though right now I feel like it.

Because I know some of that anger is misdirected.  It is misdirected because I, too, have stood in judgment of someone like me.  I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children.  When I have children, mine will never behave like that.”   I, like most people, wasn’t quite as obvious about it as you.  I didn’t stare or make comments that could be heard.  But I was every bit as decided.   So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.

The nice thing about human nature, however, is that it can be overridden.  And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions.  Then presto whammo — you are a new and hopefully improved person.

Let me introduce you to my child.  Like you, I marveled at the miracle of life upon becoming his mother.  Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him.   Like you, I had certain dreams for my child.  There your path and my path diverged somewhat.

My precious child is autistic.  Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter.  The truth about autism is that it encompasses a wide spectrum of abilities.  And, like you and me, every autistic child who has it is different from the next.  Yet they do often share some similar traits – sensory overload and meltdowns are one of them.

Every person on the planet has what I think of as an internal alarm system.  Most of us have ours in good working order.  But some people with autism have what I like to call a hair-trigger alarm system.  Theirs can go off with what seems to average folks like little to no provocation.  But there IS always provocation.  Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off.  And when it does, it can be loud.   Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them.  When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm.  It isn’t his fault.  And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.

I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated.  It hasn’t been so pleasant for me either.  Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do.  And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public.  I have to leave the house and so does my child.  Because I have to teach him about the world.  I have to let him practice controlling his alarm system.   So that he, too, can go out into the world successfully too.

With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children.  And for some of us, our dreams will have to change for our children.  We may need to re-define happiness and success.  For life is like that.  We constantly have to reevaluate our expectations of ourselves, others –and, sometimes, even the grocery store.

I’m hoping that your single human interaction with me has given you an opportunity to be a better person.  For, with 1 in 59 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me.  All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm.  You could be the bright spot in our day.  And, then, if you want, you are welcome to ask all the questions you want.  Your curiosity doesn’t offend me in the least.  Most of us aren’t the least bit upset to talk about our kids – any more than you are.  If anything, it is an opportunity to educate and dispel myths.

And, maybe, just maybe, you will be standing there when the alarm gets turned off.  Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.

Who knows?  Maybe I’ll get to see the one hidden behind yours.

If you liked this post, you might also enjoy:

“We Don’t Talk No Baby Talk Round Here!”

Reply to a Disgruntled Reader

Dear Friend Whom I Haven’t Seen Much of Lately

Letter to My NT (Neurotypical) Child

Or you might like “Excess Baggage” from Random Pearls of Wisdom.

From the Rooftop: Autism Disclosure

Last year, when I made the realization that my then-20 month old son was showing clear signs of being on the autism spectrum, I shared my concerns with a few people.  Those people had one of only two reactions.  The first was denial.  I was told that my son was too young, too cute, too social, and the oft-repeated “But he’s a boy.  They develop later than girls.”   I understand this reaction.  Parents often worry for nothing — especially about early development.  Boys are different from girls in their development.  And, yes, my son’s spectrum behaviors are somewhat atypical.  (As for being too cute?  Well, I don’t deny for a moment that he is The Cutest Little Boy in the World, so there is that.)

It was the other reaction that left me somewhat disconcerted and admittedly…torn.  I was immediately told by several people to keep quiet about it.  I’m not suggesting that they didn’t want us to seek help for him.  They did.  But they also insisted that we should protect him from any stigmatization by keeping it a secret.  Not wanting to make any irreversible mistakes, initially we followed that advice.  Only close friends and family were told, along with my administrators, who would inevitably notice all of the days I had to be out for assessments, appointments, hearing tests, etc.

But as the months passed, I found this advice difficult to follow.  We live in a small city.  One tends to bump into acquaintances in one of only two therapy centers in the county.  Family friends know that ASD in the family.  Inevitably, one member of the family is incapable of keeping a shut mouth.  To state the obvious, it gets out.  In our case, because Callum has some indicators that he may one day be high-functioning, I found myself wanting to clarify his situation as being hopeful rather than bleak.  So, while I initially intended to protect his privacy, life happened, and now folks know.

Yet it wasn’t mere inevitability that decided the secrecy issue for me.  What decided it were my experiences as a teacher.  After years of working with ASD kids in middle school – in a range of severity and ability – I have reached the conclusion that not only should ASD not be shrouded in secrecy , it should be shouted from the proverbial rooftop.

In my sixteen years working and teaching in multiple schools across the school system, I have met a lot of ASD kids.  While they have all been verbal (nonverbal spectrum kids in this county usually attend a special-needs school), their functioning has varied from non-reader to academically gifted and from requiring a full-time aide to being completely self-sufficient.  I have also worked with kids who were clearly – to persons with any sort of knowledge of autism spectrum disorders – clearly autistic/Asperger’s, but were never diagnosed due to their families’ desire for secrecy and a refusal to have them evaluated for needed services that might “put a label” on them.

In addition to ranging in severity, function, and awareness of their condition, they have also varied in the positivity of their middle school years.  In my experience, the ASD kids on the more severe end of the spectrum fare a little better in terms of teasing and bullying.  Their behaviors are so obvious that the typical kids seem to “sense” their differentness.  The bullies among them don’t bother as much to target those kids as they don’t give as satisfactory of a response to teasing.  This is not to imply that severe ASD kids don’t suffer from bullying.  They do.  But most middle-school bullies prefer a victim who will provide a little more “entertainment” and interaction.

The ASD kids on the higher-functioning end of the spectrum, in my opinion, don’t fare as well.  Their differences and needs are perceived as weird or deliberate, and they suffer all the negative attention that follows.  Because their diagnosis is known, however, school staff try to be on the lookout for such things and often make accommodations to help them navigate around the bullies.  We try to pair them up with more sensitive students and have plans for them on special events days.

But the ASD kids who are never diagnosed or whose condition is not revealed?  They have it worst of all.  These kids, whose families- and sometimes even doctors and teachers- want them to be viewed as “normal”, have received little to no help whatsoever.  They have endured years of criticism about their poor handwriting, clumsiness, social awkwardness, etc.  They have been left alone in the world, trying to navigate a mine-field of subtle human behavior, facial expressions, and unwritten rules of social norms.  These kids could have received speech, occupational, physical, and cognitive therapy.  They could have been taught how to interpret otherwise inexplicable-to-them behaviors of the world around them.  But they get nothing.  Their middle school years are pure hell.  They don’t even know themselves why they are different.  Imagine being that intelligent and not knowing why your life is so hard.

A desire for secrecy – as well as the well-intentioned desire to “not stigmatize” them – denies these kids years of help and the understanding of others.  To me, that’s unforgivable.  Because in the ASD world, that level of high-functioning is a gift horse you just don’t look in the mouth.  

Just imagine how years of speech, occupational, and cognitive therapy could have benefitted them.  Would they still be autistic?  Of course!  But they could have been autistic with friendships and accomplishments and far fewer memories of bullying and humiliation.  I pray each day that my son learns to speak in sentences and that his joint attention improves to the point of being able to learn academically.  I pray each day for him to have the opportunities the high-functioning kids have.  I also pray that, no matter what his level of functioning, that I will find the right words and actions to help him fit into his world.

Yet all I have seen with regard to autism disclosure is…nothing.  Either the autistic child’s functioning is so low that the other kids just sort of naturally leave them alone or their functioning is so high – but so unusual as to be weird – that the other kids tease and bully them.  I have yet to see a moderate to high-functioning child who understands his own condition enough to help others understand or a parent or counselor (with parental permission, of course) come into the classroom and visit with the other students to explain it for him.

The thing is, I really do believe that could make a difference.  It is amazing how typical kids can and do often rise to the occasion when something is explained well to them.  Will bullying still exist?  Of course.  You can’t be different and not experience it at all.  But when you point out the obvious, you, to some degree, disarm those who would have done it for you.  You educate others and prepare an easier path for yourself.  At the very least, you put the world on notice of how you expect to be fairly treated and can then reasonably expect to hold them accountable.  Until then, you can’t say they really know better.

I am certain that there are those and will be those who believe that I should keep Callum’s challenges quiet.  And I know they mean well.  But I’m coming at this with the hope that his abilities will be such that he will need me to help clear that path for him in the regular classroom.  I’m hoping his functioning will be at such a high level that he will seem merely odd, rather than incapable, and need the understanding of his condition by those who might not otherwise have perceived it.

I might not get what I want.  He might never progress beyond a few words and gestural communication.  If that’s the case, we will love him and help him to be the best and happiest Callum he can be.  If that’s the case, then our revelation of his ASD status will be moot.  Everyone will know anyway.

But if it isn’t the case, then I’ll still be the eye in the sky reporter, watching for trouble, pointing out roadblocks, and suggesting other routes.  I will visit his class and help his classmates to understand.  I will insist that not only his teachers be present for initial parent conferences but also any para-professionals, administrators, office personnel, or cafeteria managers who might need to know who he is and why he does what he does.  I will continue to do those things until he can do them for himself –so that I will never see the look of grief in his eyes that I have seen in so many ASD kids’ eyes.  I might not be able to change the world.  But, by avoiding secrecy and ignorance, I can help to improve his.

And at the very least?  I intend to put them on notice.

Reply to a Disgruntled Reader: On Person-First Language and Autism

From a Reader:

 “Because you are a teacher, you should know that children are not autistic. Children HAVE autism. The behaviors are autistic. How would you refer to a child with cancer? Surely, not canceristic.”

Dear Reader,

I read your comment and set it aside.  I waited because there isn’t a correct way to respond to this.  I can’t win no matter what my response is.  Clearly, you are strongly of the opinion that people should place descriptions of children AFTER the noun “child”, presumably because you want to stress “child” rather than “autism”.  I realize that you do not want to see children defined by a condition.  I get that.  I do.  But I would be lying to you if I told you that I agree.

Just a few days ago, my friend Jenny, also an autism mom, made the comment that she wished people would stop using the term “children who have autism”.  She thought it sounded like some dread communicable disease.  You know, like “I have crabs” or something equally disconcerting.  At the time, I remember thinking how funny that was – precisely because I have heard impassioned arguments to the contrary!  I remember thinking that, no matter what one says these days, you offend somebody.  And, clearly, I have offended you.

Abraham Lincoln once made this dry criticism of a writer:  “He can compress the most words into the smallest ideas of any man I ever met.”  The English teacher in me loathes wordiness.  It obscures meaning, as one is too busy shoveling crap to get to the main idea.  I believe that political correctness has forced us all to spend a great deal of time adding more and more words into our sentences to describe… the obvious.   I don’t use vulgar slurs.  And I dislike hurtfulness in all its forms.  But I believe that we can rearrange the adjectives and nouns to our heart’s content – and not change a thing except to make it immensely difficult to get out a single sentence without pausing repeatedly to shift around all the words.

Our society is already quite comfortable referring to certain groups of people via description.  The deaf community.  Senior Citizens.  Diabetics.  Brunettes.  Gifted children. You don’t hear many screams of outrage demanding those persons be called “groups of people who are deaf”, “Americans of advanced age”, “people with insulin resistance”, “women with brown hair”, or “kids who are much smarter than their teachers”.  You simply don’t.  I can rearrange all of the words into new prepositional phrases and -you know what?  It won’t change a thing.  Even in the autism community, people with an Asperger’s diagnosis affectionately refer to each other and themselves as “Aspies”.  Search the internet, and you will find dozens of websites with funny t-shirts designed for autistics and aspies who want to proudly and amusingly claim their unique status.

For many months now, I have been likening observations of my son to having three sets of eyeglasses.  We analyze his behaviors in terms of him being two years old, being autistic, and also simply being Callum.  But the frustrating part is that I cannot classify any of his behaviors using just one pair of glasses.  For he is all of those things.  Remove one, and he ceases to be the little boy that I love.  He is an autistic two-year-old boy named Callum.  Converting the adjective into a prepositional phrase will not change anyone’s perception of him.  Nor do I believe the argument that it will change his perception of himself.

The thing is, I am certain that there will be folks who reply in to this, passionately disagreeing.  There will also be people replying in, passionately agreeing.  Yet nothing conclusive will be determined.  People might fight about it and spew insults.  And some will want to sing “Kum Bah Yah”.  But neither side will emerge the victor.

And all that drama would be a shame.  Because, I promise you, promise you, my feelings for my autistic child are every bit as loving, protective, and passionate in my belief and faith in him as yours would be for your child with autism or some other reader’s child who has autism or her friend’s child battling autism.   To me, and others who agree with me, they are the same child – regardless of the part of speech.

That’s why I didn’t quite know what to say to you.  Because I won’t win.  People will be upset.  And, we have enough controversy in our community.  We have divided camps over DSM classifications, vaccines, biomedical approaches to autism treatment, genetic research, etc. etc.  I think it isn’t particularly helpful to any of us to insinuate that some of us are insensitive simply because we prefer the adjective lead the noun.  Nor do I think that people who see it differently are idiots.  I think it is a preference.

But it hurts me to think that folks with a different opinion would accuse me of insulting children.  For I love each and every autistic child that I teach.  And I love my child with autism.  I don’t want to upset anyone, but I will inevitably upset someone.

So, that’s the best response I have to you.  And it still isn’t satisfying to either one of us.  But I want you to know that I mean no harm.  And I wish you all the best.