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.

25 responses »

  1. Matthew says:

    As a pediatrician, I’d like to formally say, ‘thank you’ for this post. It and many of the comments below were definitely food for thought.

    When it comes to the ‘wait and see’ line, I would submit that it is reasonable in some case. If it is an active step, and involves the family. If we sit down and talk about where a child is and what is considered ‘normal’ and if we develop a plan for the next few months and talk about Early Intervention if goals haven’t been met by a certain point.

    I would be doing a great disservice to my parents if I reflexively sent every child who scored low on a question or two to Early Intervention. I would send hundreds and hundreds of families through needless hoops, lost wages, and real worry for nothing.

    That being said, pediatricians have a direct responsibility to catch delays, review screening forms and LISTEN to parents concerns. If soft signs are building up or there is a serious delay, there is no reason to wait. There is every reason to act. Serious autism has usually manifest by 12 months but many of the softer forms can get brushed off in that critical second year. Getting therapy early is so important and it is our responsibility as pediatricians to MAKE THIS HAPPEN.

    I appreciate your even-handedness, your understanding of what we do, and your call to action. We need to keep raising awareness, and we can keep doing better.

    • FlappinessIs says:

      Thanks so much for getting what I was attempting to say. The last thing I wanted to do was attack doctors. You are right, of course. If a child is only slightly behind his peers in one or two things, simply giving him time to develop is fine. Kids DO develop at different rates and panicking over late walking or something isn’t necessary. My MIL drove me crazy with my first child because she walked at 13 months. I couldn’t convince her that normal development has a range and to just chill out. With my son, things were different and – as you pointed out – building. Luckily, his doctor was like you – she listened and never once treated me like a hysteric. She even went so far as to admit that she wasn’t an expert in autism and that we needed to go ahead and get him to a developmental pediatrician.

      Thanks for everything you do for your patients and in being a leader in autism awareness. I’m sure your patients and their parents love you. 🙂

  2. beebsandbro says:

    I hate the “wait and see” line! Most states have an early intervention program that includes an evaluation at no cost to the family. I am still at a loss as to why my doctor didn’t just give me that info upon my expression of concern!

  3. I literally, kick myself, every day that I didn’t push to have my son further evaluated before his 2nd birthday, probably closer to his 15-18month birthday. But I was young (23), a first-time mom, and I “didn’t know any better”. But in my heart, I KNEW something was wrong when he was 18months old and STILL not walking, had lost the few words he had, and had lost all social interactions except sparse interaction with Mommy & Daddy. I KNEW, yet I didn’t push forward. My son started preschool 4months before his 3rd birthday…. he was 32months old. Back 11years ago…. that was early, but I KNEW something was wrong before then. I WISH WISH WISH I had pushed forward for evaluations sooner and that I had changed doctors sooner.

    But now, at nearly 13years old, our son has still far surpassed our wildest dreams. He’s very social (not age-appropriately, but we’re working on that), he talks ALL THE TIME (again, not age-appropriately, but it’s coming along) and he’s definitely not “severely autistic” like he was diagnosed back at age 2.5years old.

    But again… that nagging voice tells me “who knows where he’d be if I had pushed a year sooner. But, I feel things happen for good reason. I think if we’d gotten the diagnosis sooner we may have decided not to have our 2nd son. I think HE’S the reason why Ashton (the autistic one) has progressed as much as he had. So things happen for a reason.

  4. Britta says:

    Very well stated. I was apparently the only one concerned about my child’s speech delays. Everyone around me kept saying to “wait it out” and see what happens because “you never know if she will just start talking in sentences one day.” To be fair, I think they were giving me the most PC answer that they could think of. I’m glad that I didn’t listen and started getting her speech therapy when she was 2 years old. Now that she’s 3 and gone into the school system, they are telling me it’s autism, but lots of other people are saying that they don’t see it. There’s a big part of me that’s in denial, and so, when I went into the pediatrician for her 3 year check-up and he said “wait and see,” I was relieved. But I wonder if I’m just lying to myself. Obviously it’s best to get her ALL the help she needs as early as possible. My husband denies that there is anything wrong with her at all, and so I feel like I’m doing everything on my own: going to ARD meetings, going to outside classes, emailing the in-home parent trainer to talk about strategies, etc.

  5. Jill says:

    My aspie is 9 now. Still to this day, when I tell a new doctor (staff member at school, new therapist, etc) that my son has Asperger’s, I get “but he has such good eye contact!” At this point I just ignore the comment and continue on.

    Best advice to a mom whose intuition is telling her SOMETHING is wrong, keep looking for an answer. I was told everything from I was an overly anxious mom, I needed a hobby, I wanted something to be wrong with my son when there was nothing wrong with him, that I wanted attention, that I was a hypercondriac, that I had too much time on my hands, that I didn’t play enough with my son and that is why he was exhibiting signs that worried me, that I didn’t spend enough time with him, I let him watch too much tv, etc, etc ~ from my favorite pediatrician, a second pediatrician, family, friends, school staff, his prek teacher, parents, inlaws and his father… At one point you even think to yourself, maybe they are right and I’m the wrong one…

    It kills me sometimes when I think on how he was not diagnosed til 6. If only I had tried harder, gone to more pediatricians, changed pediatricians, researched better, read more about autism spectrum disorders, talked to more moms, etc… Eventually I found my way to Kennedy Krieger and had him evaluated, But, I did my best. Just wish my best had gotten him evaluated earlier. I knew something was off but had no idea what, nor where to go for help.

    Ultimately you have to believe in yourself. You are the best (and sometimes the only) advocate for your child. No one else will advocate for him/her the same why you will. So keep grinding away

    • Jill – I would love to talk with you! My 4 year old has Aspergers but most everyone said he was FINE! One psychologist evaluated him and gave him the label. I was on the wait list at Kennedy Krieger but canceled my apt but I was worried I’d get more of ‘no, he’s fine’. I had my boys in a study at KK (Study for siblings of kids with autism) and even they questioned how I was qualified. But I agree, a mothers intuition trumps everything!!

  6. Leona Majesky says:

    Wow, again you could be writing about my son. Early Steps said he was just a bad kid, at 26 months he didn’t talk much, just labeled things, no pointing, little eye contact, didn’t play with toys, and lots of flapping. He is 3 1/2 now and in an ESE pre-k, but no autism diagnosis. I am still fighting to get him the help that he needs. His first pediatrician just dismissed my concerns. I would much rather have the label and the help he needs! It shouldn’t be such a long hard road!

  7. I just want to say, RIGHT ON, SISTER. We’ve got our non-flapping, sometimes eye contact making, social and hugging (on his terms) autistic kid. We’ve been told countless numbers of times that his eye contact was too good (3+ years of DEDICATED therapy just in eye contact). That because he spoke to people (never mind that it is scripted, one-sided, or completely inappropriate) he was not autistic. Because he doesn’t have any Rain Man-esque talents…my list goes on and on of why he supposedly “isn’t” autistic.

    And then people spend more than an hour with him. They realize that he perseverates. That he doesn’t actually play with toys, or if he does, it is scripted. They see the lack of eye contact and the lack of empathy or other perspective.

    They don’t get him. Until they do.

    And meanwhile, we continue to search for people who will understand and help him.

  8. Jenni says:

    This made me cry – as a lot of your writing does. You could be writing about my life. My daughter is almost 5 – this month – and all her red flags were apparent at 12 months. She also had regression but it still took 16 months of specialists, testing, arguing to get her diagnosed. There are still some who believe she does not have autism. … Not all with autism act like Rainman. They also act like Einstein and the most brilliant scientists in the world. Best to your son this month through your IEP process.

  9. k.d. says:

    My daughter’s ped mentioned autism when she was 12 months old, and he referred us to his superior at the clinic who took ONE look at her and scoffed. It didn’t come up again until around age 2 and with a new ped because we had moved. The new ped was very supportive in pursuing developmental evals and getting speech therapy. I was concerned at that point but not strongly motivated, and not due to the medical community, but because of friends and family who mostly all scoffed at my concerns, chalking it up to my inexperience with children. My daughter had all the signs you mentioned, all those same delays and signs, minus the flapping. What she has always done is sensory seeking behavior, involving constant movement, rolling, crashing, etc. The tell tale test she failed at the developmental screening we eventually got at Kaiser when she was 3 1/2 (after a 1 year wait) was when the dr withheld a toy she wanted to hold, held it out of her reach, and instead of making eye contact with the dr to indicate she wanted the toy back, she would only look at the toy held overhead, and scream and cry, which led to a 30 minute meltdown even after the toy was returned to her. That went together with my frustration that I could never get her to look at anything I was trying to show her: “look at the fire truck” or “look at the airplane”, etc. She would sometimes look around, but always in the wrong direction because of her inability to look at me. The lack of speech, the meltdowns, the poor joint attention, the sensitivity to light and sound, all of that got her a diagnosis that day, but it took 3 hours of observation BY EXPERTS. That’s why I get so pissed when a doctor or anyone takes ONE look at her and dismisses our perpetual daily struggle in one judgement. That happens to us even still.

    And if I had a quarter for every time I’ve been warned about labels! I like what you said about how you can UNlabel easier than turning back the clock. I pursued early intervention and now after 2 years in developmental preschool my daughter will be starting regular kindergarten next fall with minimal support.

  10. Same here in Australia, our son was 3 and a half when diagnosed. I had niggling doubts and it was his daycare that picked up on it and suggested a hearing test and to look at the possibility of Autism. Luckily he was then quickly taken into the system and given lots of support!

    always listen to your own inner voice, I hate to think what happens to the families that don’t push!
    ciao lisa

    • Lynne Pardi says:

      Yes, always heed that inner voice, and ACT on it, despite your fears!! Your child’s future depends on it. My severely autistic son is now 25 and living in a group home. Back in 1988 -’89, he was a toddler exhibiting many signs of autism; and, I was a mother who knew “something was wrong,” and was scared to death. I didn’t know much at all about autism, so didn’t suspect it specifically– but my instincts were “screaming” that my little guy was not “normal.”

      I stuck my head in the sand a lot, and went further into denial. Even when we finally did seek answers, the process moved oh-so-slowly; and, as we now know, time is of the essence with these kids! Early intervention is crucial!! “Jay” underwent so many tests and evaluations and observations!! My husband & I were interviewed. He was, in the end, diagnosed as autistic and mentally retarded. A rather grim picture was painted for us. We were given little hope. We became depressed and overwhelmed.

      Jay entered our public school system and was shuffled from one special proram to another over several years, making little progress. His behavior problems multiplied and worsened. Our family lived under a terrible strain, and Jay wasn’t getting the treatments he needed ( many of which were not available then, but some were). When he entered puberty, he became physically aggressive and destructive. I desperately faught to keep him at home– did until he was 16.

      Finally, after a few hospitalizations, Jay was placed in a small, community-basd group home with 24-hour staffing. It isn’t the outcome that I wanted, but life is more peaceful now for us all– including Jay, who seems fairly content with his life now.

      I think Jay would have fared much better if he had been born today. So much more is known now! There are programs tailored specially for autistic kids in most school systems– programs that incorporate the latest knowledge and give these kids their best chance! Everyone is more aware of autism now.

      I just want to tell parents to take your kid to the pediatrician the minute you suspect a sign that “something isn’t right.” Ask for an evaluation, and don’t give up until you get one!! You want to see a “developmental pediatrician”– ASK for one!! Better to be overly-cautious and proven wrong! Don’t let your fears stop you from getting your child the help he/she so desperately NEEDS. The problem won’t go away if you ignore it– it will get worse!! Put your Faith in God, arm yourself with as much knowledge as you can, and fight for your child.

  11. We’d never heard of autism before my brother was diagnosed 13 years ago, and you have no idea the number of doctors we went to and the months it took before we were given a diagnosis. At that time, and where we were, people really had no clue whatsoever what was going on. You’re lucky your child got help early – we didn’t get to start until well after 3…maybe even 4 years of age. Time was wasted because doctors (at that time) didn’t know what was going on…

    Anyway, the thing is, I totally agree: in this case it’s better to be over-cautious than lax. Problem is, I’ve actually met a few people whose kids are displaying what is completely apparent to me as autism and although they agree there are “autistic signs” … they turn around and tell me: “I don’t think this is real autism”. Ummmm. What?

  12. Bridget says:

    Our pediatrician, whom we have found to be actually pretty supportive, definitely gave us the standard reassurances when we started having questions about our son. At 18 months old when he was lining things up all the time, I was told that’s just how toddlers make sense of their world. At 2 years when he seemed unusually sensitive to sounds, I was reassured that toddlers just have undamaged hearing and notice things adults do not. Luckily, thanks to other parents on internet chat boards, I was able to learn about sensory processing disorder, and later Asperger’s (with which my son was diagnosed at age 3 1/2). But that never would have happened at such a young age if I had not spent the hours searching for answers and bringing them to the professionals.

    Every day my husband and I are so thankful that we figured out our son has autism and started with interventions early. In my experience (which I suppose is the only experience I could have, lol), doctors, psychologists, and OTs are more familiar with the more severe end of the spectrum in young children. If you have a child who can speak and is bright, they have a very hard time seeing the full picture. So it falls to the parents to assemble all the information, do all the research, and tell the professionals what is going on to get a diagnosis. Thank heaven for the support of other parents and their willingness to share their stories like you do, because for many of us, that is the only way to figure out what is really going on with our kids.

  13. Lisa linderman says:

    Wow! I am amazed as to how similar our stories of diagnosing autism are. I am very proud of you and what you are doing for future families! Thank you. I too know how hard it was and continues to be.

  14. Debra says:

    Another great post! Please include General Practitioners & Family Doctors in this list of dr’s to educate!

    My son wasn’t dx (HFA) until 4.5yo and my daughter not dx (Asperger’s) until 7yo even though at 2.5yo they were kicked out of a daycare for exhibiting classic asd behaviors. At that time we were referred by the daycare (not the GP) to early intervention. The school district early intervention team recognized delays but would not refer to anyone who would dx (of course because that would mean they would have to fund & provide intervention). Fortunately another child at the same daycare was already seeing an OT who visited at the daycare & who suggested an OT eval. I got both kids in OT before age 3yo. GP, I learned later, not only took a “wait & see” but also decided that I was hypochondriac and refused to treat me when my bp was reading 116/96 on home monitor due to sleep disorders related to the stress of raising twins w/autism by myself!

    I only learned where to take my kids for dx from another parent at spec ed preschool. Then there was a 1yr wait list and even then Children’s Hospital misdx my dd as “developmental delay unspecified w/sensory issues”- why? because a) girl’s social development is faster than boys at that age & b) she was high functioning w/Asperger’s so we got the “she’s too social, makes eye contact (though sporatic) & approaches others”

    I was a 1st time parent- most of the dx burden was on me & I knew nothing about autism or typical development! Lack of knowledge & support by the medical community in our case was the biggest factor in delayed dx & delayed supports.

  15. Ann Burt says:

    I was hoping things had changed in the 21 years since my son was born. His father and I, while educated and intelligent, had no background in teaching or autism. When I pointed out to our pediatrician that he flapped his hands continually, our doctor told us it was nothing. He made eye contact, was affectionate, but to say he was a “difficult” child would be an understatement. It was at a birthday party for an adult friend, at which a child psychologist saw our son, then about 9, flapping away, that he asked me what therapies I was taking my autistic son to, and what did I think about them? Let me repeat, we had been told over and over again that his hand flapping was just a quirky personality thing. At this point he had been diagnosed as ADHD and ODD. When I think of the YEARS that he could have been receiving the correct therapy it still makes my blood boil

  16. I.
    This was our experience for the first 3 years and change.
    I wish I had pushed harder.
    We didn’t know what we didn’t know.

  17. Same thing happened to us. “She’s just a late talker”. No, she had ZERO communication skills at 18 mos. Our daughter’s godmother, an SLP who specializes in autism, was the one who told me to get help sooner. She told me to go with my gut instinct. Lindsey is 12 yo now and still doesn’t talk or communicate very well. I tell everyone who comes to me with their own concerns…Go with your gut feeling. Get them tested by autism experts (not necessarily the dr). I tell them it is better to get tested and find out for sure.

  18. Hillary says:

    This is a fantastic article. My job is working out in the community to help get kids an evaluation, when they need one, as soon as possible. I will share this with some of the parents who can be frightened about having their child labeled. Thanks for continuing to be such an articulate voice about your experiences with your son. I look forward to reading many more.

  19. We had a pediatrician, at 18 months, when he was already displaying many of the “classic” signs, tell us to just wait till he was 2. We promptly got ourselves to our local early intervention program, found a new pediatrician, and got a diagnosis and therapy started by the time he was 2.

    Trust your instincts. I knew virtually nothing about autism, but I did know that something was off.

    If your pediatrician is dismissive, or patronizing like mine was – find a new one!

  20. CeCe says:

    My mouth is hanging open. I had nearly The same experience. That (bleeping bleepidy bleep) attitude of ‘wait and see’. My child didn’t flap. My child didn’t toe walk. Yet he too has autism. I’m so thankful that I’m a PITA an insisted on an evaluation. I’m thoroughly convinced that early intervention saved him. It’s undoubtably why he is doing as well as he is (yet we still have enormous challenges ahead of us).
    I hope you don’t mind but I am printing this and bringing it with me to my next pediatrician visit – as well as sending it to the quacks at the practice we left.
    Thank you for writing this so well. Now if only these doctors actually read and implement this…. our kids will be so much better for it.

  21. Jim Reeve says:

    I love your post. We’ve been very lucky when it comes to our son’s diagnosis and we too feel that doctors deserve more credit and respect than they get. When our son was young, we visited a pediatrician who swore that Jacob didn’t have Asperger’s because he was too social. We understood because Jacob was very social, made eye contact and expressed his feelings very well for a young boy. But we all felt that something was still amiss. So our pediatrician referred us to a doctor with expertise in autism. And Jacob was eventually diagnosed as having Asperger’s.

    We first thought “How did the pediatrician get it wrong?” We then realised something much bigger. Our son’s doctor admitted that they didn’t know anything about autism. How many doctors admit they don’t know something about an ailment pertaining to a child? We then began to appreciate the pediatrician’s honesty. Because if she hadn’t, who knows if and when, Jacob would have been diagnosed properly.

    So I’d like to thank Jacob’s pediatrician for doing the right thing. Because without her, where would we be?

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