Category Archives: Letters

Dear Well-Meaning Individual: So You Know An Autistic Child, Huh?

They’re just like snowflakes; no two are alike.

Disclaimer:  I am not a scientist.  These are my own views, based upon my own research and perceptions.  The analogy I discuss below is one I shared with a dear friend of mine – who happens to be a doctor – and she thought it was a good one.  This is merely my way of attempting to convey the complexity of autism to lay persons.  If you want science, there are far more qualified persons than me to consult.  The Thinking Person’s Guide to Autism is a great place to start.  Those ladies are way smarter than me and speak the language of science.  And The Autism Science Foundation won’t lead you astray. 

 The other night, an individual (I’ll allow to remain nameless) called to tell me all about how she met a woman with a grown autistic son who was doing so well that he is able to drive to the grocery store.  She thought that perhaps I might want to meet said woman and see if the woman might have any “tips” or advice to offer me.  It was obvious to me that she thinks my son hasn’t made sufficient progress (him being three, not toilet trained, and using just a few words) and that I could use some help.  I ask for help frequently from parents of other autistic kids, but I resented the implication from this person that this other mother was the “success story” I could emulate – if only I were willing. 

Being of the sort who tries to articulate my thoughts, I attempted to explain why I wasn’t interested in all of her recent -and frequent -suggestions.  I tried to convey to her how many suggestions, cures, and treatments people have pitched to me.  I tried to explain why we decided to end biomedical treatment.  (It wasn’t working, and my views of my son’s autism and autism in general have changed.)  I tried to tell her that I have reached a point where – though I do believe in the benefits and necessity of speech, OT, and PT and do research other promising and tested new therapies – I have accepted that Callum is mostly going to be who he is already wired to be.  And that he is simply too young to assess how his individual brain wiring is going to affect his future.  It’s trite, but – in the end – time will tell.

All I got on the other end of the line was…silence.  The unmistakable indictment in silence.  I grew frustrated and began babbling about how I wasn’t really getting across what I meant.  Eventually, both of us tired of the awkward conversation and hung up.  I walked away unsettled.  Defensive.  Wanting to cry.  Knowing exactly what she was thinking.  She’s given up on her child.  She’s not going to try to keep helping him.  She’s a terrible mother, and he’ll never talk or have a normal life because of her. 

I’ve seen it in her eyes the few times I’ve seen her since then.  And, despite still believing what I said, I am haunted by her disapproval and my own self-doubt. 

There is a saying in the autism world – “If you’ve met a child with autism, you’ve met one child with autism.”  On the surface, it’s meaning is obvious.  Of course every child is different, right?  Most people would nod their heads emphatically at that statement — autism or no. 

But that statement means so much more than that. 

What everyday people who don’t deal with autism in their everyday lives think about autism, they think about it much like diseases of the body.  Diabetes.  Coronary Artery Disease.  Lupus.  Conditions that can be tested for definitively and carry a consistent course of treatment.  There are causes that can be identified, and symptoms that can be controlled via medications. 

But what everyday people do not understand about autism is that those who have it aren’t at all like those who have specific physical diseases.  There isn’t a typical progression of symptoms leading to the worst case scenario.  Finding the cause of autism is comparable to finding the cause of cancer.  Likewise, finding a “treatment” for it is equally daunting.  Why?  Because there is no such thing as plain old cancer.  Cancer is a vast array of diseases with a vast array of prognoses.  Just because you’ve been diagnosed with cancer – it does not mean that your chances of survival are the same as your neighbor’s.  Thyroid cancer is a heck of a lot better news than pancreatic cancer.  Ovarian much more devastating than minor skin cancer.  And those cancers still are comprised of different types.  Yet, we call them all cancer, right? 

Autism is just like that.  But it, like cancer, cannot be nailed down in terms of cause or even treatment.  A breast cancer victim will not be cured by removal of her prostate, now will she?  And the cellular events leading to her cancer are likely very different from the causes of the prostate cancer patient’s. 

What I’m trying to say is autism is not really one disorder.  That’s why its called autism spectrum disorder.  It is a description of a variety of similar traits — of highly divergent degrees of severity.  Some children with autism aren’t impacted with speech difficulties.  And some children will never speak.  Some will excel academically and earn graduate degrees.  Some will never learn to read.  Some autistic adults grow up to marry and have children.  Some cannot tolerate the touch of another human being.  They are not the same people, and they do not have the same disorder.  It just carries the same umbrella term.  What created the differences in the brain wiring of one individual on the spectrum did not necessarily create the differences in another.  The reason there isn’t a definitive “cause” of autism is because it likely doesn’t exist.  There are genetic links.  There are suggestions of environmental factors.  Prematurity increases risk.  Some forms may be merely a natural variation in the human spectrum.  The causes appear to be many.  Therefore, the effects are many as well.  Which means that what will help one autistic person isn’t necessarily going to help another.  And some on the spectrum don’t need our “help” at all.

It is not the fault of their parents for what they did or did not do in terms of doctors chosen or treatments attempted.  One child’s autism is not another’s.  No more than one person’s cancer is another’s.  So calling up the parents of an autistic child and telling them all about what “fixed” another person’s child or comparing autistic children to one another is an exercise in futility – and cruelty.  Would you call a lung cancer patient and berate her that she isn’t doing as well as your neighbor who had that spot of skin cancer removed from her nose?  I think not.  But people do it all the time to us.

Our children are individuals with individual differences.  And assuming that a severely autistic child will do just as well as a mildly autistic/Asperger’s child using the same interventions is a cruel misconception.  Why?  Because it automatically points a finger toward his parents, his school, his therapists.  And it suggests that the child may not have fulfilled his own potential.   This is not to say that parents should just give up and allow nature to take its course.  Yes, there are interventions that can greatly help children across the autism spectrum.  But I believe that we must consider the starting point of each child before setting our goals.  If goals are reached, then you set another one.  Sometimes amazing things happen that way and children seemingly without hope reach unpredicted milestones.  But the harsh reality is that some autistic children’s wiring is so severely impacted that they will never function independently.  And it isn’t pessimistic; it’s realistic. It is accepting the child for who he is while working to help him be the best him he can be. 

So, friends and family, acquaintances and strangers, I respectfully ask that you back off.  You might not know what you’re talking about.  You mean well, we know.  But we already have our hands full trying to maximize the potential for happiness – in whatever form it comes – in our children.  We don’t need amateur neurologists theorizing what we could be doing differently.  It’s insulting.  It’s frustrating.  It hurts.  If you want to help, how about calling and saying, “I know you’ve got your hands full.  Do you have a project around the house you think I could help with for an hour or two?  Do you need an hour or two to yourself?  Do you need me to run an errand?  Or take Susie to dance class, etc.?” 

That’s the kind help we really need.

Tell It Like It Is – On Being Asked What It Is Like to Have an Autistic Child

Earlier this summer, a well-meaning acquaintance I was chatting with at a birthday party asked me an honest question — “What’s it’s like to be a mom of an autistic child?”  She wasn’t being nosy.  I happen to like her and know that she was genuinely interested in my experience.  But what I saw in her eyes was pity.  She even teared up while we were talking.  Those of us with special needs children know that look.  I called it The Look of Tragedy.  Again, she meant no harm.  So, I got to thinking.  What is it like to have an autistic child?  After all, they come in all sorts of shapes and varieties.  I’m just starting out on this journey, yet many have seen their children through to adulthood.  Some of our children will be self-sufficient.  And some will live with us or in a group facility for the rest of their lives.  So, I admit that I cannot answer that question for everyone.  But I can answer for me.  And, in that answer, I will likely be speaking for other parents of other very special children.

So, here it is.  Here’s what it’s like:

1.  To begin with, it’s [a kind of]* death.  No matter how much you plan to allow your children their freedom to achieve their own dreams, quite naturally you have a few dreams for them as well.  You dream of birthdays and holidays.  Santa and presents.  Playing dress-up, doing arts and crafts, playing Candyland, dance classes, Boy Scouts, sleepovers, team sports, high school graduation, getting married, and having children of their own to love.  And, though many of our autistic kids will grow up and have and do just those things, more than half of them won’t.  At least not without a great deal of assistance and likely not in any resemblance of the typical joy of those things.  So, you mourn.  You mourn for what might not be.  You mourn for what you and they are missing now.  And, later, you may mourn for what will never be.

2.  Despite the death of the dream child you envisioned, you are deeply in love with the child you have.  He still does adorable things you want to share with others.  He loves you too, but the rest of world won’t always get to see it.  Because when he is away from home, he is not himself.  He is not the happy, affectionate child who holds your hand, snuggling, and gazes at you adoringly while pulling your hand to scratch and rub his back.  They won’t get to see him at his most charming and you will know they are so very glad they aren’t in your shoes.  You will see pity in people’s faces.  And they won’t ever understand the very real, profound joy this child gives into your life every day.  Part of being a parent is pride in your children.  People won’t see what you are so proud of.  And that can be a lonely feeling.

3.  Guilt assails you from all directions.  You want to throw a beautiful birthday party for your child.  But he may not notice.  He may not be the least bit interested in the presents, and you will dread any look of disappointment on the giver’s faces.  He may be struggling to get down out of your arms during the party, and there is an air of sadness just beneath friends’ and family’s smiles.  So you consider not having a party.  You consider not taking him to others’ parties.  You want more than anything to give your child the experiences typical children have and feel guilty when you don’t.  But sometimes it is simply too overwhelming for you both to undertake it.  Therapists want you to spend hours doing activities to help him, but you also have a job, perhaps other children who need you too, and you need some downtime on occasion or you’ll go insane.  So it seems you can’t ever do enough for him.  The guilt is a killer.

4.  You live in a constant state of uncertainty of the future.  Yes, of course none of us knows our future.  But, if you have a typical child, you can be reasonably confident he will have friends, self-sufficiency, and love.  You know who to leave things to when you die.  But if you have a child with autism, you won’t know how to plan your estate.  Do you set up a special needs trust?  Do you leave it all now to the one typical child who can use it?  Because lifetime care for your autistic child will just drain it.  And what if he grows to do well and is able to care for himself?  Because you can’t yet guess what will be, every option is insufficient.  Uncertainty can affect every part of your life.  Should I settle here in this city or plan to relocate to a city with more intensive care for his needs?  Will he ever talk?  Will he ever be toilet trained?  You just won’t know until it happens or it doesn’t.  And you live with the fear that one day your then-elderly, vulnerable child will lie sick or dying without the comfort of someone who truly loves him.  Anxiety runneth over.

5. Spontaneity is a thing of the past.  You can’t just get up and go.  You have to determine whether there is an escape route from any new activity or location.  You have to pack things to distract him if he becomes upset.  You have to determine if foods he will eat will be present or if you will need to pack his meal.  If he isn’t potty trained, you will worry about where you can take him to change him that will afford you both some dignity.  Everything – everything – must be planned and considered.

6.  You begin to grow thicker skin.  Because people will and do stare.  They will stare in disgust, thinking he is simply badly behaved.  They will stare in curiosity, because that is the nature of man.  They will stare in horror or pity, because “there but for the grace of God go I”.  People stare.  And the thing that will come back to haunt you are memories of when you, also, made a judgment about another person in public.  Righteous indignation mixes with humility and all you want to do is get out of wherever you are as soon as possible.  But you can’t escape everyday life.

7.  You grow weary of everyone else’s opinion.  Because there are so many of them.  There are those who are certain they know how “this” happened.  There are those who are certain they know how to “fix” him.  There are those who don’t think you do enough.  There are those who believe you to be a saint.  There are those who believe your child’s very visible difficulties allow them to have an opinion over your finances, his education, your marriage, and even your decision to bear another child or not.  Opinions abound, but your patience may not.

8. But mostly it’s like love.  A love that you, if you are a parent, can probably imagine.  And a love that, if you don’t have a child born with a bulls-eye in a big, bad world, you can’t.  Unconditional doesn’t begin to cover it.  Limitless.  Earth-moving.  Making you question everything you know to be true about God and man.  And that kind of love will haunt you every moment of every day.  You can see it just behind the eyes of every special needs parent on the planet.  We are filled with a love we never could have predicted.  We are filled with fears we never could have imagined.  We are, quite simply, at capacity most every day.  And, yet, when inevitably called for, we find that capacity expands.  We aren’t better parents than you.  We aren’t saints.  And our children aren’t lucky to have us.  We are lucky to have them.  Because, despite all of these very challenging aspects to having an autistic child, none of us will walk away from this life without having grown – merely from having loved them.  Having become more than we thought we could be.

No, this – like many challenges one never asks for – isn’t easy.

But, I assure you, these children are worth it.  :)

*Later I decided to clarify this statement.  As it was, it may have implied to some that it was equal to the literal death of a child — which it is not.  I meant it more as another kind of death, similar to divorce, estrangement, foreclosure, prison, and other profoundly life-altering experiences for which one goes through the stages of grief.  

Dear Friend Who Just Did The (R-word) Impression

Dear Friend,

I’ve known you a long time.  And I love you.  I really do.  A thoughtless comment on your part isn’t going to change that.   Because I know you are a good person.  I know you wouldn’t be deliberately hurtful to another.  You have been there for me through my life –my wedding, births, deaths, professional successes, the idiotic decisions I’ve made, and even those moments not fit for public discourse.  You’re a great person.  You make me laugh, and you are one of those friends who shows up.  You know what I mean — the people who don’t just ask what they can do, but just arrive when they’re supposed to.  That’s you, my friend.

But, oh, how I wish you  hadn’t just said what you said and did what you did.

Just a little while ago, we were having a great time.  We got a babysitter, cleaned up whatever substances the children smeared on us, and took off to remind ourselves that we are still capable of socializing with grownups.  At some point, somebody shared an amusing story or point.  And that’s when you did it.  You made a comment about “not being a retard” and then made a gesture I doubt you seriously considered.  You raised your hands and screwed up your face in a parody of a person with a neurological disorder/genetic condition/brain damage and altered your voice — doing the classic “retard” impression.  (The r-word – which we’ll call it from this point on.)

And here’s the thing.  I’ve seen you say and do that before.  Several times.   Times when I didn’t think too hard about it.  No, you would never tease an actual person with an intellectual disability like that.  But you’ve amused yourself and others many times in small group get-togethers – usually just making a quick joke about something being dumb.  But that was long before I gave birth to a sweet, beautiful, seemingly perfect baby boy who, at 3 1/2 years old still isn’t talking, won’t play with others, and takes no joy in toys of any kind.  That shook me to my core and altered everything I thought I knew about myself, humanity, unconditional love, and the evolution of personal strength.

So, coming from the perspective of a mother who is very likely someday going to hear someone tease her child cruelly, there is nothing – nothing – funny about that at all.

And here’s why.  It’s not because we’ve lost our sense of humor or the ability to laugh at ourselves or life.  It’s because we now personally know exactly how the mother of an intellectually disabled child would feel upon seeing you do that.  It’s because some of us personally know how painful that is to the heart of that same child.  Yes, they do know when they are being talked about.  They do know when they are being excluded.  So would a pet dog.  Yet they are not dogs, they are human beings.  And they deserve that respect.  They have worth.  Their lives have value.  They can be happy, be productive, and give joy to others.  And that’s just something you are not going to fully understand until the issue affects your life in a profound way.

So, friend, I’m going to ask you to do something for me.  I’m going to ask you to try to step outside of your own perspective and natural defensiveness and just trust me on this — this is another one of those Golden Rule kind of things.  When speaking of human beings, always go with respect for the dignity of the human soul.   That path will never steer you wrong.

Dear Joe Scarborough – On Autism and Violence

Video Link

Dear Joe Scarborough,

Today, you made some comments that infuriated the autism advocacy world.

You stated:

“As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale…I don’t know if that’s the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses — they can even excel on college campuses — but are socially disconnected.”

There are a lot of angry folks out there who sincerely believe you are ignorant, fear mongering, reckless, and using your own child’s diagnosis as a prop for your ratings.

And you know what?  I’m not one of them.  And that’s not because I am a fan.  I don’t watch a lot of TV these days and haven’t watched your show enough to have an opinion of you one way or the other.

So no, I don’t think you are evil.  I think that, like every parent of every child, you probably love yours just as much as I love mine.  And I’m not so jaded in my political views that I assume you and other talking heads don’t care about real people and the effects of your commentary.  I may be naive, but, like Anne Frank, I think most people are essentially good at heart.  I’m going to have faith that applies to you as well.

But I do think that you fell victim to one of the easiest pitfalls of personal experience — that of envisioning yourself as an expert.  Probably all of us in the autism parenting/advocacy world do that to some degree when encountering the subject open for discussion.  Herein lies the problem.  Unlike most of us, you have the ear of the world.  And a world that may simply be distractedly listening in while cutting up a salad and listening for the rinse cycle.  They likely will not follow what I believe is your hypothesis — that of communication disorders being linked to social ostracization and social rejection often being a cause of young mass murderers.  I’m hoping that this what you meant — that any noticeable difference can lead to social rejection/bullying and that the sometimes subsequent depression can be a breeding ground for hatred and retaliatory violence.

But, Mr. Scarborough, that’s not what you said.  What you said was so general as to imply that autism is directly related to mass murder.  And this scares me.  Because much of the public will perceive this to mean that autistics are inherently dangerous to the general population.  When, in reality, it is the opposite.  Statistically, persons with developmental disabilities and mental illness are more likely to be harmed by the rest of us.  They are more likely than you or me to be harassed, bullied, abused, and defrauded.  And, if the public suddenly begins to fear them, we can be assured more of the same.  For it is always fear that begets violence.  Whether it was your intention or not, you have now contributed to that fear.  For the sake of my autistic child, yours, and everyone else’s, I am now more afraid than before you spoke.

Mr. Scarborough, if you unintentionally misspoke, please correct it.  Clarify your position, and take some time to do some damage control — not on your own behalf, but on behalf of your son and the autistic community you have mischaracterized.  And, if you spoke intentionally, then I challenge you to do some research on links between violence and autism and report back.  I think you might find yourself surprised.

You, sir, have an opportunity to do what most of us as parents of spectrum children cannot — brighten the path of our special children by educating and preparing the world to understand them.

That is a blessing that most mothers and fathers of autistic children would not cast aside lightly.  Neither should you.

Sincerely,

Flappiness Is

Lipstick Kisses: In Praise of ESE Instructional Assistants

Today was my three-year old’s last day of Pre-K ESE summer school.  (In our school system, it is but three short weeks.)  When we went to pick him up, several of the ladies at the county’s exceptional education school (where the program is housed each summer) came out to tell us how much they loved having him, how sweet he was, and how much they would miss him.  When my husband remarked that Callum’s little cheeks had lipstick marks on them, one went on about how “kissable” he is.  Then the instructional assistant who normally works with Callum during the school year at his home school started laughing and bantering with the ladies from this school about how they needed to back off and they that couldn’t have “her baby”.   Oh yeah.  It warmed this mama’s heart alright.

And it got me to thinking about the role instructional assistants (or if you prefer – teacher’s aides) play in the lives of our special children.  As a teacher, I already knew much we need them in our schools and how they manage to keep things running smoothly.  Yet, they are paid next to nothing.  I’ve known instructional assistants who, after the cost of insurance premiums for their family, receive paychecks of maybe thirty dollars bi-weekly.

But these individuals are an important part of our children’s schools and lives.  This is not to underplay the importance of their regular and exceptional education teachers.  But those teachers are insanely busy crossing T’s and dotting I’s these days.  They struggle to teach the state curriculum while having to plan for a wide variety of accommodations and teaching methods to best reach their students.  Too often, they don’t have the time they would like to have to meet the individual needs of our children during the course of a typical school day.  Not with all the paperwork, meetings, and other silliness imposed upon them by The Powers That Be.

That’s where the instructional aide comes in.  In the elementary school, they are often the ones rocking an overwhelmed child in a corner, feeding those children not yet able to do so, and giving out extra love and hugs.  At the secondary level, they are the ones who jump in to defend a misunderstood child from other students and even faculty.  They are the ones sitting outside at a bench with a child who has just been given a time out, listening and reasoning with them.  They get to know the children individually in ways the overworked and multi-tasked teachers are unable.  Good instructional assistants see themselves as teachers as well and are invaluable.  Yet they aren’t often included in Teacher Appreciation Week.

So today I’d like to say a big thank you to Callum’s instructional assistants and all the dedicated  exceptional education assistants of the world.  Thank you for loving our babies.  Thank you for caring that our children require their crackers and bread to be of a uniform shape.  Thank you for seeing in them the beautiful, loving, and valuable souls we know them to be.  Thank you for making it a little easier to place a defenseless child into the hands of another.  And for lipstick marks.  Especially for those.

You brighten their days and lighten ours.  You are a remarkable blessing indeed.

Letter to My Special Needs Child’s First Teacher

Two years ago, my husband and I took our daughter school supply shopping for the first time.  Armed with list in hand, we searched for the requisite items, allowing her to pick out the colors and designs.  We were nervous about her first day.  I was emotional, wavering between excitement and pride and fear of putting my precious little girl into someone else’s hands.   We talked it up to her and made a big deal out it, allowing her to choose a special first day outfit and hair clips.  Then we walked her in to her classroom, helped her find her cubby and seat, kissed her goodbye, and left.  I teared up as I left, like many mothers – but knew in my heart all would be well.  And at the end of her day, we delighted in hearing from her about each and every new experience.

Last night, we made preparations again for her little brother’s first day of school.  We went to the store to buy school supplies.  Only, this time, we picked them out ourselves. My son, mostly nonverbal and autistic, doesn’t have an opinion about his lunchbox.  He doesn’t know his colors yet, nor does he express a preference.  He doesn’t even understand that he is going to school today.  This experience of The First Day of School is altogether different for us.  And at the end of his first day, he will not be able to tell us what he thought or how he felt.

In a couple of hours, we will-supplies in hand- walk him into a very big building.  In it will be hundreds of children who can follow directions, feed themselves with a spoon, are potty trained, and can – if frightened or in pain – express their needs.  My son cannot.  Yet I will be placing his tiny, just shy of three-year-old hand into someone else’s – someone who does not yet know and love him.  Someone who will not be able to understand the few words he has and the peculiar ways he attempts to communicate.  Someone who will not know how to soothe him when he inevitably gets lost in confusion and frustration.  I cannot begin to convey the bone deep terror I am feeling right now.  He is so little and helpless.  And it is such a very big bad world out there.

I met you last week at his IEP.  I tried to use every instinct I had as a teacher to get a feel for you.  My instincts tell me I made the right choice.  You weren’t assigned to him by chance.  Teachers know all about homework, and I did mine.  Yes, I shamelessly queried every connection I have made in my years in the school system to find just the right classroom for him.  You are rumored to be the best.  I can tell you that some mighty fine people whom I like and respect think very well of you.

Having done that, I now have to step back and let you do your job.  I have to trust in your experience and love for special little ones like mine.  Let me assure you that, though I feel confident in my choice of you as a teacher, this is the hardest thing I’ve ever had to do.  For, somewhere in your classroom – is a cubby with the name of the little boy who encompasses my entire world.

And though I am trying, there really are no words.

As a teacher, I know what you need from me.  I have been where you are.  And I want you to know I plan to support you.   I will take into consideration that you are a person – not a saint.  I know all too well how bone tired  you can be at the end of the day.  How hard child neglect and apathy can be to your mind and heart.  How critical the Powers That Be in Education really are.  I know how all of your planning time is stolen for stupid meetings and unhelpful consultants.  I know.  I do.

So, here is my pledge to you.  I am not going to make your life a living hell over the little things.  You are allowed to be sick, sometimes have to come up with things on the fly, have your head turned during a minor bump on the head, and even forget a note home or phone call.  You aren’t superhuman.  I pledge to not expect perfection from you.

In return for this, I would like something from you.  I would like you to remember that this little boy is mine.  I would like you to remember- when he is being difficult – that he cannot speak for himself, cannot share his fears, desire for mommy and daddy, and confusion over the new expectations placed upon him.  I would like you to remember how fragile and defenseless he is while learning how to navigate this world.  I would like for you to grow to love him for the sweet, loving little boy who cuddles with me and holds my hand each night.  I know that, having chosen to do what you do, you already know these things and have already made that committment.  But, please -on the most difficult days that all teachers have – remember you are holding my world in your hands.

Thank you for your sacrifice.  For, though we both know the rewards of teaching are many, I know the time, dedication, and expense you put into it –for little pay and a great deal of hassle.  May you be blessed with patience, love, determination, optimism, realism, and the stamina that I know is required to do what you do well.  If you need anything at all, please pick up the phone and call.  For I know for certain that, in this sacred trust, I am calling on you already.

If you liked this post, you might also enjoy:

Letter to My Neurotypical Child

Letter to My Autistic Child

Apology from Your Child’s Former Teacher

Dear Friend Hesitant to Interact With My Special Needs Child

Dear Friend Hesitant to Interact With My Special Needs Child:

I know my child makes you nervous.

It’s okay. Really. I still love you.

Knowing you to be the good and kind person of whom I am fond, I know the lack of interaction with him isn’t deliberate.  You are simply afraid, not of him but of doing something to upset him.  I have had this same fear in being around other people’s special needs kids in the past, so I get it.  I do.  But it makes me sad that you may be holding out and miss getting to know my sweet, precious little boy.  Because he is truly worth knowing.

One of the great wisdom statements about special needs children is that it is important to remember that they are first –children, followed by their special needs.  But I know that many folks, you included, see my child and see his special needs first.  And, I can’t blame you.  He is certainly different.

But, really, he is just a little boy, three years old.  And, though he is autistic and differs from typical children, it doesn’t change the part of him that is, first and foremost, a child.  Those of us who have, love, or work with special needs children get this.  But as my child has grown and his needs have become more evident, I have noticed well-intentioned family, friends, and acquaintances such as yourself struggle with how to interact with my son.

When my friends meet him – and aren’t sure how to engage him – it usually goes something like this:

“Will he get upset if I…?”

“Is he doing this because…”

“But he is so _______!  Are you sure he’s autistic?”

I know you aren’t avoiding him because you find him repugnant.  You are simply hesitant.  You don’t know where to begin.  And you probably feel guilty about it.  You may feel that stress come over you when you see him – wanting to interact with him like you would any other child, but fearful of saying or doing the wrong thing.  It probably doesn’t help that you once saw “Rainman”.   So, you ask questions but hold back, unsure of what to do.  I know you want a clear picture of him – a kind of map to guide you in interacting with him.  And that’s where I can’t completely help you.  Because getting a clear snapshot of a child with special needs is a very difficult thing.  Hence all the specialists.

I have used my three lenses analogy before, as it seems to make the most sense to me.  Often, I try to figure out what is going on with my son and find myself asking, “Which is at play here?  Autism?  Typical Toddler?  Or just Callum?”  I drove myself crazy doing that, trying to break him down into parts in my quest to figure out how to best help him.  And finally it hit me that I cannot analyze him in terms of one or another.  For he is all three.  He is at once a 3-year-old, an autistic child, and himself – Callum.

It’s like trying to take a picture with an SLR camera.  Normally, you can simply point and shoot and get a pretty good picture.  But, if you are in dim lighting, or there is a great deal of movement or distance, you have to use special settings and special lenses to filter and enhance the image.

Trying to figure out what motivates a special needs child can be complex.  To get a picture of that, you need three (or more) lenses.  You need the original camera lens itself to take a simple standard picture.  Then you need a second lens that filters for special needs – autism, Down Syndrome, etc.  You might need, depending on how many special needs conditions the child has, several such lenses.  Finally, you need a lens that enhances that child as an individual.  Because, like everyone else, special needs kids have their own temperaments, interests, fears, etc.  So, to get an accurate picture of a child with special needs, you have to take a picture with all three lenses at the same time.  For if you remove one of the lenses, the picture does not reflect the true child.

The problem is that some of the lenses we need still haven’t been invented.

So what do I say to my friends who honestly want to get to know my son but are hesitant about doing so?  It’s really simple.  Just ask me about him.  I’m all too happy to help you connect with him. I’ll tell you all about him.  Feel free to ask me what he likes.  How you might best make a favorable impression.  What might upset him.  And, then, just go for it.  Visit wearing comfortable clothes and get down on his level.  Take an interest in what he is doing and attempt to join him.  He’ll notice you.  Pretty soon he will likely begin interacting with you to some degree.  And, if you let him warm up to you, you might even get to roughhouse with him and get in some tickling and giggling.  He’ll love you, I promise.  And, if you are unwittingly doing something that might not be the best way of engaging him, I’ll be there to suggest another.  Soon, he may climb up on your lap. He will recognize you in the future and maybe smile when you walk in the door.  You will have made a special little buddy who will melt your heart.

And then you will have a clear picture of my child.  A child like every other –yet not.  A child who loves, laughs, plays, snuggles, fears, delights, and enjoys cookies as much as any other.  He may do all those things differently.  But he does do them.  And knowing him and forging a relationship with him will change both you and him for the better.  For not only is he worth you knowing, I happen to think you are worth him knowing.  :)

Now, let me introduce you to my child.  I think you two are going to like one another.  :)

If you enjoyed this post, you might also like:

Dear Friend Whom I Haven’t Seen Much of Lately

Why I Won’t Be Getting Mother of the Year: Layers of Understanding

Letter to My Neurotypical Child

The Place Where There Is Time for Everything

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.

No More Wait and See in Autism: A Plea to Pediatricians

Dear Pediatricians,

Let me first preface what I want to say by telling you that I truly appreciate what you do.

Many years ago, my best friend realized that she had missed her calling and decided to go to medical school.  I remember her journey from the application to med school letter I helped her edit, through her move to Miami to attend med school, the frantic hours of studying and coffee overdoses, through her years as an overworked, sleepless resident, to the very non-glamorous and non-fortune amassing reality of opening her own practice.  I remember conversations over the phone in which she enlightened me just how much there is for a physician to know and how little time there is in which to learn it.  People tend to see physicians as living high on the hog – when, in reality, you are business owners also struggling to maintain a profitable practice while jumping through government and insurance hoops in order to provide the best care for patients you are still just as dedicated to as you were when you began as a young, idealistic medical student.  All while having to maintain a straight face while calmly explaining to your patient that, no, the diagnosis is likely a hangnail and not that exotic tropical cuticle parasite he read about on an online health board.  I haven’t lived it, but I understand that the very act of being a physician is, in many ways, a sacrifice that is often unappreciated.

So, I do not view you as the enemy.  In fact, pediatricians are my favorite kind of doctors.  Why?  Because you guys answer the phone on weekends and weeknights.  You actually have an answering service.  You folks will see a sick patient faster than any other kind of doctor.  And many of you will open up on Saturday mornings.  For when your patients get sick, they tend to get sick fast.  And you know that when your patients are sick, their parents are agonized with worry – thus creating two patients really.  You must endure tantrums, being bitten, ear-piercing shrieks, hysterical mamas, patients who cannot speak for themselves, heartbreaking tears, and witness abuse and neglect on a frequent basis.  As a teacher, I do a little of that myself, so I have a particular fondness for you guys.

Now that I’ve expressed how wonderful you really are, let me tell you a little bit about me.

I am the mother of a soon-to-be three-year-old on the autism spectrum.  I say “on the spectrum” because we do not yet have our official diagnosis.   (That process begins next month at our return visit to a developmental pediatrician.)  I know that one is not supposed to claim a diagnosis before it is given, but autism runs in my family.  And, when you’ve seen it, you know it.  Even if that weren’t the case, I’m a teacher.  In fourteen years, I’ve seen a little bit of everything.  So, I began our journey with autism already somewhat familiar with it and its signs.

My son has been delayed in every developmental area, some more than others.  He rolled over a few weeks late.  He sat late- yet not overly so.  But everything he did was just a little later than expected.  He never crawled properly (a knee walker).  He didn’t point.  He didn’t progress much past “Mama” and “Daddy”, and he didn’t begin walking until 16 1/2 months.  We were also a little bit worried about his hearing, but he had tubes and frequent ear infections, so a possible hearing loss wouldn’t have been a surprise.  Knowing that none of these things in isolation were definitive indicators, I mentioned them to our pediatrician in early visits but I didn’t panic.  He was, after all, affectionate, interactive, and full of joyful expression.  So we kept our cool.  At least until he began flapping.  The kind of flapping that anyone who knows autism recognizes.  I knew.  And I knew enough to get moving.

I took him in for a developmental assessment the day he turned 18 months old.  That was my cutoff point when I gave myself permission to panic. 18 months until “wait and see” would no longer be an option for me.  Our normal physician was on vacation, so we took him to see another doctor in that practice.

And the minute the doctor opened the door to the examining room, my son turned, looked him in the eye, and gave him one of those devastatingly cute smiles of happy toddlers.  We had been sitting in a very clean, tidy, sterile room with nothing to be distracted by but a small bucket of toys.  So, when the doctor walked in, my son was at the toy box – delightedly scattering them all about.

I know exactly what this doctor was thinking.  He, a wonderful and dedicated pediatrician, surely had seen many cases of severe autism in his years of practice.  And he was looking at a little boy smiling and hugging his mother, showing an interest (albeit very brief) in someone entering the room, making eye contact (again – very briefly), and sitting in front of a toy box.  I know this doctor had the skills to recognize severe cases – head banging, no interaction whatsoever, aversion to touch, etc.   And, seeing an absence of those behaviors, he reassured me that he wasn’t worried.  He did suggest that, if I was still worried, I contact Early Steps for an evaluation .  And he did listen to me while I discussed specific behaviors.  But he didn’t see what was already evident to the trained eye.  Here is what he missed:

1.  Though my son did show an interest, it was brief, very brief.  18 month olds should maintain more consistent eye contact when spoken to and hold it for longer than my son.  They should show an interest when offered things and a desire to interact.  And not just on their own terms.  On their own terms is a phrase known all too well by parents of autistic kids.

2.  My child, though not excessively delayed in any one thing, did show a consistent tendency to be behind in every developmental area to some degree.  This is very common among kids with autism spectrum disorders.

3.  He wasn’t pointing.  And I don’t mean just not pointing with an index finger.  He wasn’t indicating what he wanted in any way or drawing my attention to things he wanted me to see – ever.  This is a Big Red Flag.  The misconception is that it is but one symptom of autism in a list of many.  Nope.  This one alone is enough to warrant further investigation of a developmental delay.

4.  My son was sitting with the toys.  But he wasn’t playing with them.  He was repeatedly throwing them.  But not playing.  Children with autism spectrum disorders often do not know how to play with toys appropriately.  The fact that he was interacting with literally the only items in the room did not mean he was playing appropriately.  There is a big difference between playing with a toy truck and repeatedly banging it on the floor.

5.  We voiced suspicious of a hearing problem.  No.  This, in itself, is not an indicator.  The indicator is that it was combined with so many other symptoms.  Almost every parent I know with and ASD child was worried about a hearing problem first.  Almost always, their child’s hearing was perfect.

This smiling affectionate baby you see here making eye contact? He is on the autism spectrum. It isn't always so obvious.

Had he been looking at symptoms presenting more severely, I believe he would have pulled out an M-CHAT.  I do.  He is a good doctor and one I would return to.  Truly.  He just wasn’t as cognizant of milder symptoms of autism.  I didn’t know about the M-CHAT, so I walked away happy – desperately wanting to ignore the nagging voice inside my head and so relieved that a doctor wasn’t worried.

Fortunately for my son, that nagging voice wouldn’t shut up.  I had seen enough autism and read enough about it that my mind would not rest easy.  Being a school librarian, research is instinctive to me.  So, I jumped online.  That’s when I found First Signs.  And that’s when I discovered the M-CHAT.  I printed it out and answered the questions.  And he flunked it.  (By flunked, I mean that he scored just one number above passing without a need for further investigation.)

And here’s the thing.  He only just flunked it.  Only enough for it to say, “This may warrant further evaluation.  Take this to your doctor”, etc.  So, I called back and got in to see our regular doctor.  We talked.  She, too, is a wonderful doctor.  She also told me she wasn’t too worried.  But, after seeing our M-CHAT results, she went and got another M-CHAT and proceeded to interview us to complete it.  Again, he just flunked.

I love our doctor.  She listens and she doesn’t presume to know everything.  And she had already ordered up a physical therapy consult.  But it is because of that barely flunked M-CHAT that she referred him to a developmental pediatrician and ordered up additional speech and occupational therapy consults.  She, too, saw my son’s strengths and wasn’t anywhere near as convinced as me that there was an autism spectrum issue looming.  At that point, no one was but me.  Not even my husband.  I remember psychoanalyzing myself and wondering if I was developing hypochondria by proxy.  Even when we had the Early Steps screening,  the therapists evaluating him compared him to more severe cases and told us they didn’t think it warranted going to a developmental specialist.

But it did.  And now everyone sees what I was so worried about then.  This is one of those times when “I told you so” isn’t quite so gratifying.

So, finally I get to what I need to say.  I know that you cannot be experts in everything.  I understand that medical specializations exist for a reason.  But the problem is that, too often, our kids won’t be seen by specialists soon enough — because the need for a referral wasn’t recognized.  To further complicate matters, your patient won’t be pestering you to get one either.  His parents will likely be so relieved to hear there is nothing to worry about that they might not press harder, even though their instincts might be screaming at them that something is wrong.

And this is a very bad thing.  Because the younger a child is, the greater the likelihood of therapy making a significant difference in their future abilities.  There was a time in which conventional wisdom dictated that we wait until the age of three or even later to seek a diagnosis.  There was a fear that the child might be misdiagnosed – “labeled”.

Let me state emphatically that the worst thing that can happen is not a label.  The worst thing that can happen is that a child does not receive needed intervention for months, likely years after they demonstrate a need for it.  Children can be unlabeled.  What they  cannot do is turn back the clock.

Autism spectrum disorders are a complicated thing.  There is no magic combination of symptoms that guarantee a diagnosis.  Some ASD kids walk on their toes.  Mine didn’t.  Some flap.  Others don’t.  But there are clear red flags.  And those red flags need to be recognized sooner – and not in just the severe cases.

I know that you are busy treating patients.  I know that you have lives of your own.  And I’m sure that stack of physician journals you want to keep up with grows larger every day while you are working longer and harder hours.  But advances in autism research are being revealed almost every week it seems.  My concern is that I don’t believe this research regarding early diagnosis and earlier methods of detection is being absorbed by our pediatricians soon enough to make a difference for the kids who need it.

I have a combination of over 4,000 subscribers to my blog, Facebook, and Twitter accounts.  And I hear from dozens of parents each week, often sharing stories of a delay in needed diagnosis and early intervention.  This tells me not that our pediatricians don’t care.  Of course you care.  It tells me that detection of autism and other developmental delays is not where it needs to be in this country and in others.  It tells me there isn’t enough continuing education in autism for pediatricians.  It tells me that, even though 1 in 110 children are now being diagnosed with autism, that we aren’t being nearly aggressive enough in working to identify these kids early enough to begin therapies that will allow their little growing minds every opportunity to forge new pathways to future learning – NOW.  Later is not okay.  It is needed NOW.

So I’m making a plea with pediatricians all over this country to make a conscious effort to reevaluate and expand their knowledge of autism spectrum disorders and their symptoms – even in the likely mild cases.  In quiet examining rooms with few distractions, our children’s symptoms may be subtle.  I’m asking you to pay particular attention to new research in developmental disorders.  I’m calling on The American Acadmy of Pediatrics to work even harder to bring autism to the forefront of pediatric medicine discussion.  ( This official statement is not enough.)  Most parents are familiar with or know a child with conditions such as diabetes, vision problems, and ADHD.  But not every parent knows the symptoms of autism or knows a child who has it.  Relying too much on parental awareness is not a good strategy as there are simply too many people who view autism in terms of the movie “Rainman”.  Because people are usually more familiar with severe symptoms, too many mild to moderate cases are being missed until well after these children begin school – years after therapy should have begun.

 I am not suggesting that physicians deliberately ignore the DSM and diagnose autism before it is indicated.  I know that some patients simply do not neatly fit the defined disorders.  But the autistic label isn’t what is important.  The screening and early intervention is.  A “wait and see” approach to autism screening and intervention is not acceptable.  Yes, some children do take a bit longer to walk, talk, etc.  And, if a child is simply a bit behind with no other indicators of autism, the screening will reflect that.  But too many parents in my shoes have listened to bad “wait and see” advice when their children were clearly showing multiple symptoms of autism.  Advice that has haunted them and made them wonder what might have been different if only their precious children received help earlier.

While my child was fortunate enough to have been born into a family that – through experience – recognized subtle symptoms of autism, not every child is.  My son began therapies at 19 months old.  Most don’t get that.  Too many children in this country are not diagnosed until well after the start of preschool and kindergarten, particularly in minority communities.  This isn’t because their parents are neglecting them.  It’s because there isn’t enough awareness.  And that means that pediatricians around this country are going to have to step up to the plate and do better with this.

Because, in too many cases, you are likely to be the only person in that child’s life who will both recognize the symptoms of autism and be able to steer their parents to the therapy those children need Just you.  You may be the thing standing between that child and early therapy.  For that reason, our kids are going to need pediatricians to become leaders in autism awareness and education rather than mere facilitators to access other physicians.

You are on the front lines of autism.  And your patients and their parents need you to charge fearlessly ahead.   For each time a developmentally at-risk child receives early intervention, there is hope for a brighter future filled with greater opportunity.

“He is the best physician who is the most ingenious inspirer of hope.”

-Samuel Taylor Coleridge

Wondering if your child or a child you love might be autistic?  Here’s what to do.

5 Things I Would Do for My Son and Others Upon Winning the Powerball Lottery

Dear Universe, Random Chance, Fate, All Powerful Individuals My Somewhat Suspicious Grandfather Believed Controlled the State Lottery, Etc.,

No, I didn’t address God here.  I do believe in Him.  But I prefer to think He is concerning himself with matters unrelated to state lotteries or NFL football. 

I have heard the unfortunate stories circulating in the past few years about lottery winners who later go on to personal misfortune.  It has occurred to me that this is perhaps the reason you have reservations about letting me win the Powerball lottery.  I know that we don’t actually have the Powerball lottery here in Florida, nor do I actually play it.  But my dad assures me that this should not be a hindrance if I am destined to win.  If it is meant to happen, it will happen.  So, I thought I should outline exactly what I would do with the funds should you rethink the matter and place a winning ticket in my path. 

Here is what I would do with several hundred million dollars:

1. Build a new home — complete with a large sensory-friendly playroom filled with therapy equipment and furniture ideal for preschool learning.  Build a nice guest home a little distance from the house.  Hire a full-time ABA therapist.  Recruit someone awesome with competitive salary and free housing (the guest house).  Yeah, so this one is personal.  But, if I win the lottery, my baby gets taken care of first.  However, he needs socialization and a school.  So…

2.  Put together a team of education experts –some made up of professionals I have worked with in my local school system who are awesome, recruited persons knowledgable in autism and special needs learning, and experts in charter schools and private schools. 

3.  Build an autism charter school or private school here in my hometown.  Staff it with teachers who have experience working with autistic kids, speech/occupation/physical therapists, and ABA therapists and trainers. Design it on a sliding scale of affordability for parents to enroll their children and establish some sort of foundation to assist in keeping it running after the money runs out.  I was an English major.  Somebody else will have to be in charge of that part. 

4.  Found a special needs parent organization designed to establish a chapter in each city – including mine.  The goal being to have a PTA type group looking out for each others’ common needs across a common school system and training some members to be special needs advocates. 

5.  Begin a therapy scholarship for families like ours.  Whose insurance (just yesterday) deemed that their child may not attend locally based speech, occupational, and physical therapy but most drive out of town for 6 therapy sessions per week.  People who can’t quit their jobs to do so.  People who need ABA therapists to travel to remote areas to provide services in little towns that have never heard of ABA.  People who aren’t eligible for any kind of help whatsoever because they are living high on the hog on the equivalent of a teacher’s salary.  People who didn’t sleep a wink last night — eaten up with panic in the witching hours of worry for parents of special needs kids.  Yeah, people like that.

So, you see, I have good plans for these funds.  Certainly better than that guy who put it in the bank and bought an RV, right?  I’m ready, Universe.  Bring it on.  I got this.