So you’re wondering if your child might be autistic.  I know.  I’ve been where you are sitting right now.  Searching the internet for signs of autism spectrum disorders.  Going back up to the search bar to enter a different set of keywords, hoping to find some other site that will assure you that these strange behaviors your child has been evidencing are perfectly normal.  Telling yourself he is just a little behind.  Sharing your worries with a friend or family member, calming down for a day or two after being reassured by them that, no, it isn’t autism.  And now you are wondering if you are just being paranoid.  You’re worried that you might be borrowing trouble that you don’t need and possibly stigmatizing your child with a label that will follow him around for life.  Yep, I’ve been there – and quite recently.

What does autism look like in a young child?  Well, the important thing to remember is that, just like everyone else on the planet, every autistic child is a unique person.  There are common behaviors that they share, but a child can still be autistic and not share every common autistic behavior.  Remember that.  Because getting hung up on that can make you fool yourself.  Autism spectrum behaviors do not exist in isolation.  Just one of them won’t make a child autistic.  But you put several of them together and you’re possibly looking at an autism spectrum disorder of some kind.

The one that seems to be noticed first amongst the greatest number of parents is a concern that your child might have a hearing problem.  I honestly don’t know anyone with an autistic child who hasn’t worried about this.  I’m sure there probably are some.  I’m just trying to tell you that a concern about a hearing problem is really common.  You might notice that, despite calling your child’s name repeatedly, that he doesn’t respond.

You might also worry that he has some kind of persistent ear infection.  Why?  Because you might have noticed your child repeatedly covering his ears.  Especially if it is noisy or chaotic.  You have probably taken him to the doctor, only to be told there is no infection – perhaps more than once.

You may notice that your child doesn’t seem to know how to play with toys correctly.  Instead of rolling his little truck around (or kissing her baby doll), he just sits and repeatedly spins the wheels.  Or bangs the baby doll, over and over and over.  And over some more.  He might fixate on a toy that isn’t a toy – such as a plastic hanger, a spoon or a string, or a button on your shirt.  You’ll try to interest him in something else, and he’ll drop it and go right back to the non-toy.

You probably bought him a lovey of some sort.  You may notice that your child doesn’t have an attachment to any sort of stuffed animal or blankie.  Instead, he just might carry around that plastic hanger everywhere he goes.

He probably at one point was a good eater for you.  But suddenly, you may start worrying about all the foods he will no longer eat.  He may have once loved bananas, but now won’t touch them.  He might begin to refuse everything but dry foods like crackers or chicken nuggets.  He may consent to eat only one food period.  And withholding food a little longer to make him hungry won’t work.  He’ll just cry and stay hungry until he gets the only foods he will eat.

Your child may not show affection in the same way as other children.  You might find him squirming away or resisting being cuddled.  Or you may find the opposite.  He may have strange ways of loving all over you, rubbing his arms and legs all over you, maybe even strangely wanting to run his mouth all over your arm.  His odd ways of handling touch may also include an aversion to touching things that are wet, or gooey, or crumbly.  Or you may find him smeared all over with anything spreadable he can get his hands on, rubbing it in over and over again.

You may have noticed that your child does not point to what he wants.  This is a big red flag.  He also may not ever bring anything to your attention, like a toy or the stars.  In fact, you have may have noticed that he doesn’t attempt to share your attention, like turning to see if you saw Elmo do that silly thing.  And, if you try to point something out to him, his eyes might not follow the direction in which you are looking and pointing.

You might be losing a lot more sleep than you did with your first child or what your loved ones told you was typical.  He might not have ever settled into a sleeping pattern and may continue to wake you repeatedly each night.

The thing that might be worrying you the most is that he either isn’t talking or that he stopped saying the words he used to use.  He might not be saying single words such as mama, daddy, ball, juice, etc. by 18 months.  Even more disturbing is that he might not try to communicate with you in other ways, such as taking your hand and leading you to what he wants.  He might be delayed in other ways as well, such as crawling, walking, using a spoon, etc.  When he does walk, you may notice that he prefers walking on his tiptoes.

And, you just might have noticed something strange he is doing with his arms.  It looks a little like that hand flapping that people do when they bite into something that is way too hot.  Except he does it a lot.  Especially if the TV is on.  He may just flap away.  And stop.  And then flap again.  And maybe moan or grunt in his excitement.  (Please don’t try to stop him from his flapping.  If he isn’t autistic, he’ll stop one day.  If he is, you are trying to stop a mockingbird from singing.  It is simply how he expresses his excitement.  You’ll get used to it, don’t worry.  Flappiness?  It just is.)

So now the Theme to Jaws is playing in your head.  And you are asking yourself, “What do I do?  Should I call my doctor?  What if he doesn’t have autism?  What if everybody finds out and treats him differently?”

Here’s what you should do.

Call his doctor.  Explain to his doctor each and every one of the symptoms your child has.  If your doctor waves away your worries and says, “Let’s wait a little longer and see”?  Either convince her, insist, or see another doctor.  Even very good doctors may not recognize some of the signs.

Get an autism screening.  I’ll repeat that.  Get an autism screening*.  Even if your child were falsely diagnosed with autism-even if he is simply a late bloomer- it won’t make him autistic.  He’d simply continue to thrive, and you could throw that diagnosis in the trash.  Or get him undiagnosed.  A false diagnosis is not the worse thing that could happen.  The worst thing that could happen is that your child is autistic and would miss out on years of beneficial therapy.  The worst thing that could happen is that dark regret that would haunt you years from now that you didn’t trust your gut.  There are a lot of special needs parents out there who can tell you about that.  Don’t let that be you.

And if he is autistic or has Asperger’s?  You know what?  You’re gonna be okay.  Yes, I’m talking to you.  Don’t believe all that foolishness about it taking a special person to raise a special needs child.  It doesn’t.  It is the child who makes you special.  Really.

You are going to grieve.  You are going to grieve for things you took for granted that may not come to pass.  He might not ever play Little League, be a Boy Scout, or skateboard.  Then again, he might.  The not knowing is the hardest part.  Hope is a roller coaster.  You will need to remember that your child has not been taken from you.  This is the child you were given all along.  And no one, no one, is better suited to be his champion.  You are allowed to cry.  Try not to do it in front of him.  And then you are going to have to put on your proverbial Big Girl (or Boy) Panties.  Suck it up.  You already knew you’d walk through fire for him.  So suit up.

And I’ll tell you something else.  Autism, at its worst, can rob you of a lot of things.  But it doesn’t have to be a tragedy.  It’s still early.  Autistic children may not ever learn to talk or care for themselves.  But they will still give you joy and teach you many things about love and gratitude.  Autistic children may grow up to need support, but have happy, productive, and fulfilling lives.  Some autistic children may go on to great things, their minds uniquely suited to bring something to humanity that it hasn’t seen before.   You know about Einstein, Mozart, Andy Warhol, Temple Grandin, Dan Aykroyd, and other successful people across the autism spectrum don’t you?  Yep, they are or are suspected to be [have been} on it.  But there are a lot more people out there on the spectrum who are co-workers, friends, parents — just everyday folks who see the world from a different vantage point– than you might expect.

Then, with diagnosis in hand and therapies started, reach out.  Join a support group.  Read books.  Write a blog.  Advocate.  Join the online autism spectrum community – made up of ASD people, their friends and loved ones, doctors, therapists, teachers, and more.  They are an amazing group of people whose arms are open to you.  (I just made that discovery myself.)  And repeat to yourself:  I can do this.  This is not a tragedy.  And I am not alone.  

For you really are not alone.

Note:  Little girls can, of course, be autistic as well.  For the sake of brevity, I used a male pronoun.

*The autism screening test for toddlers is called an M-CHAT, and it’s free.  You can even print it off the internet.  Either way, your doctor will know about it.

80 responses »

  1. clare walker says:

    Thankyou for this article ,after months of thinking something wasn’t right with our son I contacted my health visiter who’s has now referrd him to specialist ,many things you said of the signs are true ,he startd to speak and slowly his speach as all gone he insist on haveing a potato masher with him all the time ,he is constantly walking in circles or charghing up and down on his tiptoes shoulder shrugging the list is endless ,but he still has eye contact and will smile at you …sometimes he sits smileing for no reason but his face lights up ,I wouldn’t change him for the world he’s my little man and what ever his prognosis we has a family will rise to all the highs and lows that shall follow.His sibling don’t know yet although they have now started to question why he acts the way he does and think his out bursts and flapping are his way of danceing .
    Its just nice to know that you are not alone and many parents are going through the same thing ,like you said in your post the time spent looking at signs symptoms trying to find a logical explantion for what your child is doing ,when you no deep down what you think it may be ,I think that’s the hardest part been honest with what you think is wrong ,once you have, hundreds deep breaths later you begin to feel less stressed and ready for what’s to follow ,am babbeling so shall go but big thankyou

    • FlappinessIs says:

      You are so very welcome, Claire. Thanks for taking the time to let me know that something I wrote helped somebody. That makes it worth it. And thanks for letting me know I’m not alone either. 🙂

  2. Klinnikka malone says:

    I just took my baby girl to the doctor and my fears have come true but now looking at your article has changed my perspective on everything I want to say thank you for that!

    Sincerely, Klinnikka
    Malone

  3. Alaina says:

    Thank you so much for this post, we’re currently in the process of trying to get our 2 year old a diagnosis. He does so many of these things and you helped me to know that I’m NOT crazy. I know there is something different with my son but I keep hearing from family and friends “Oh but he smiles and makes eye contact so it can’t be autism” I think I should email this to all of them.

    • Brian says:

      Hang in there Alaina. This was a wonderful article that I’ve read several times throughout the past few months. My daughter was diagnosed 7mos ago, based on my gut feelings, and several symptoms. She’s 2.5yrs old. Last week, she went to the same clinic that diagnosed her, and they took her off the spectrum as “not qualifying for autism”. Great news, right? Wrong! I’m having issues understanding why her pediatrician didn’t notice, but I did. Then the first psychologist said she was fine, followed by the 2nd psychologist diagnosing her as autistic, only to remove it months later. She’ll respond to her name 50/50 (if she’s not focused on a toy), eye contact is also 50/50, she still tiptoes when excited, stiffening up her arms to her side and humming. Occassionally, she’ll hold her hand to the side of her face and looks at it sideways. What’s promissing is we’re able to break her away from it by calling her name or asking what’s she’s doing. The dr’s said that was great because she’s not fixated. Too many opinions, by too many “experts”. Bottom line, you are your children’s hero. You should be strong for them, be their teacher, their champion, and their support. Play with them until your tired…then play some more. Turn the tv off, get on the floor and read to them. Be over-expressive when talking to them, be goofy, make communication fun for them. And the best advise I ever got….breathe!!!

  4. Skye says:

    Reading this made me cry, but it was a good cry… one I needed since I’ve been holding it in for awhile as I wait. My son hasn’t been diagnosed as of yet because he is only 18 months and the doctors have been telling me to wait it out, but he has many signs (flapping of the arms, turning in circles, fixated with spinning objects, won’t talk, does the tippy toe walk, doesn’t respond to name, doesn’t point, and the list could go on…) and I am going to find out soon enough once I get the appointment scheduled… I am worried and reading this definitely opened my eyes a little. It does hurt to think he won’t be what I wanted for him in life but I love him so much and no matter what the outcome is I still will love him as much as I do now and will do the best I can to help him along in life.

    Thank you for this article. Ive been searching everywhere for just something to ease me just a little… It opened my eyes for what I may possibly have to look forward to and it will be hard but I need to hang in there and be strong for my little man.

    So again, thank you.

    • FlappinessIs says:

      Thank you so much for that reply. You can do this. And your future and his are still wide open. 🙂

    • Jennifer says:

      This was a great article and so necessary! I have a 17 month old son who was just provisionally diagnosed PDD-NOS. My husband and I knew since he was around 6 months. He is our 5th child (and a twin) so we knew what was typical development and our little Beckett just was always a bit quirky. He adored his swaddle to a fault, would spin wheels, fixate on parts of toys, walk backwards, flap, tiptoe walk, he doesn’t talk, he doesn’t point and so forth. His psychologist was surprised we caught it so early because he has other traits that seem typically developing such as good eye contact, good social smile, he shows toys, plays with is brother and sister, has pretty good receptive language, can use two signs, and so forth. However, after she spent two days with him she felt confident in her diagnosis. ASD can be VERY difficult to discern. I am pretty sure my 18 year old son falls on the spectrum but we just didn’t know what it was back then. It looks so different in different children. I agree that a false diagnosis is better than waiting. Early intervention is a great help for many kids on the spectrum. The first thing we did was cut television out of their lives completely. I took an intensive workshop on the Early Start Denver Therapy model and have been working intensively with both of the twins. It has been doing wonders! Hang in there Skye! There is a great deal of support and information out there. I am a counselor who has worked with teens on the spectrum for a while as well and I can assure you that most of them have learned how to use their unique skills to their advantage and do quite well! My husband says that our son doesn’t have Autism but that he has Awesometism–it always makes me smile 🙂

    • Alex says:

      Just wanted you to know that I found your blog during a very dark time this summer, when I knew my 18 month-old daughter likely had autism but was engaged in a desperate internet search to “prove” otherwise. I read this post late at night, and I’ll never forget the moment of utter stillness that followed: I experienced both deep despair, because you spoke the truth I had been unable to admit to myself, and the beginnings of hope, because you reassured me that my daughter would make me into the mother I need to be.

      I’ve checked your blog almost every day since then. I don’t really know many people in my same situation, and those I do know, I don’t relate to for various reasons — so for a while now, you’ve felt like my only autism mom friend. And I bet I’m not the only one of your readers who feels that way. Somehow it’s hard to find our way to each other in real life, I guess. Thanks for your generosity in sharing your experience.

    • Tasha Kirksey says:

      My son (17 months) does the same exact things!! So comforting to know I’m not the only one, and there IS someone who knows what I’m going through as well… Thank you for replying. 🙂 my son goes in next month for his evaluation. We shall see what happens!! Again, you seriously just made my day.. It may seem petty, but you really did!! Thank you!!

      -Tasha

  5. Heidi Clark says:

    Great read… My son was diagnosed at 5.5yrs nearly 2 years ago… He’s diagnosed as high functioning autistic, which is even harder to get information on his specific needs as he doesnt fit any of the “criteria” mentioned above other than the lack of eye contact & requiring a little assistance with social skills.

  6. Christie Mortenson says:

    Thanks for this. Right now I am at the beginning. Doing the google searches everyday. Hoping against hope that it is all in my head and alternately thinking, “so what if he is, he is my child and I love him!” Right now, he is getting speech and OT through EI. In about 6 months he will have his appt. with a developmental pediatrician. Then maybe I will have some answers.

  7. niftynan says:

    Fabulous article! Love this paragraph the best:
    “You are going to grieve. You are going to grieve for things you took for granted that may not come to pass. He might not ever play Little League, be a Boy Scout, or skateboard. Then again, he might. The not knowing is the hardest part. Hope is a roller coaster. You will need to remember that your child has not been taken from you. This is the child you were given all along. And no one, no one, is better suited to be his champion. You are allowed to cry. Try not to do it in front of him. And then you are going to have to put on your proverbial Big Girl (or Boy) Panties. Suck it up. You already knew you’d walk through fire for him. So suit up.”

    May I repost/share this on my blog? I just started it and it only has a few posts so far. Will absolutely give you ALL the credit and link back to here.

    Thank you again for a wonderful article!

  8. Thank-you sooo much for this. I found it when you linked to it in a more current blog. I am grateful I now know of your blog and am able to follow it. I appreciate your posts and insights so much. 🙂 I also simply appreciate you and your willingness to be real. Makes this “journey” not so lonely.

  9. ellietistic says:

    this Post resonated with me, even though my Ellie does not have the classic signs, neither did his brother, but sometimes you just know.

  10. Hillary says:

    I work for the Early Intervention/Early Childhood Special Ed program in Oregon. My job has to do with helping child care providers identify kids in their care who might benefit from an evaluation/special ed services. So, I spend a lot of time talking with both child care providers and parents. I have a profound respect for the fear that parents feel, and also for what parents can accomplish in the name of loving their child(ren).
    I think your blog post is great. I would like to be able to share it (and your blog) with both families and the staff where I work. May I do so? I will be reading your blog regularly. Keep up the good work, “mistakes” and all! Hope you are feeling better soon.

    Hillary

    • FlappinessIs says:

      Absolutely! When I wrote it, I was thinking of all those formal essays with confusing terminology. I wanted to write something that spelled it out clearly. If anyone wants to copy or print this post, just let me know. Hope it helps someone. Thanks!

  11. lifestartsnow says:

    i am SO glad i found your blog. 10 years ago i worked as an aupair and in my first family the boy was autistic. i wasn’t told beforehand and ended up trying to educate myself about autism thousands of miles away from my home, in a language that i was still learning.

    it was a tough time, also because the parents did not acknowledge the diagnosis and rather tried to talk things down to the boy “having difficulties to concentrate”. the boy worked with a great therapist who helped me tremendously in understanding the boy and the diagnosis.

    the symptoms you mentioned ring very true and i hope that if another au pair ever finds herself in the same situation s/he’ll find your blog and be assured that everything will be alright.

  12. Estella Howard says:

    I am the grandmother of a child who has autism. He is my angel child. My love for him is so huge sometimes it just spills out my eyes in tears of joy. I am so filled with hope for his future and I know one thing for sure…he will know he is loved.

    • WonderWoman says:

      Thank you for being a grandmother who gets it! How sad for our kids who have lost ‘family’ because of this. Mine has. BUT, actually, they have ‘lost’ her by choosing to not understand. : /

  13. Heather S. says:

    My oldest, now 9, did most of these things (except the flappinessis..) He didn’t talk, babble, jabber, anything… He never crawled. He cried when strangers talked to him (or even family if they hadn’t seen him more recently than a few days). I took him to gymboree for two years and he wouldn’t participate – just watched everyone else. When you asked him questions, he would just stare off. He didn’t really play with toys, and was terrified of pretend animals (stuffed, barbie horses, etc). I had his hearing tested a couple of times because I just knew he couldn’t hear or something. When he was 1 1/2 his language and comprehension were tested. They said he was at a 7 month old level, but that they weren’t really sure because he wouldn’t respond to anything. And food, forget it – he fell off of the charts because he was so small for his age. He had speech therapy twice a week and I just kept thinking he had some type of autism. Amazingly, though, at a little over two, he said his first word (oof – for dog) and by two and a half had about 6 words (all one syllable, but words non-the-less). His vocabulary got bigger and bigger! Then, at around 5, things changed. I don’t know how or why, but they did. He became very social – especially with other kids. He was able to talk now, and it seemed like he wanted to talk to everyone. He now is completely out of speech therapy. He is still a little behind in his academics, but will be completely pulled out of resource classes by the end of this year. And, although still small for his age (he’s about the size of an average 7 year old and he’ll be 10 in two months), he eats and is growing. I just wanted to share this because possibly, for some, there may be hope (not for most, I know, but for a lucky few). Yes, get your child tested. Yes, get them started in therapy because it will help! And possibly, one day, things could change. Thanks for your blog. I know you are helping people!

  14. Thank you so much for this wonderful place to come and read about a journey so much like my own. In some ways, my journey differs because we adopted our son out of foster care and knew he had some developmental delay. The caseworkers kept telling us that he the delay was from neglect. The truth is that he is autistic and his birth home didn’t help the situation, but didn’t MAKE him autistic.
    When we were going through our adoption journey, I had many people (some of them close friends) question my sanity. Why would you saddle yourself with such a child? Will he ever be NORMAL? I mean, he isn’t even YOURS. All I can (and still do) say to people who believe that is I feel sorry for you. Meet my son………I am blessed to be called “momma” by him. He is not TYPICAL, but he is as “normal” as they come. And if you ever say he isn’t mine again…… I am likely to go totally postal on you. This boy may not have been born through me, but he was born TO me. Surely as any child was born to a mother. He is mine. Never doubt it.
    And finally, I am neither a saint or a lunatic. I am just a Mom who loves all her kids. I Love the way that you said it is the child who makes you special…………it is so true! He has taught me way more than I could ever teach him in one lifetime.

  15. […] waiting a diagnosis on the autism spectrum. The other day in her blog, Flappiness Is, she wrote a great post that I shared on Facebook that really put into words some of my experiences with Philip over the […]

  16. Megan says:

    LOVED this post! Our 2yr old son was diagnosed this past fall and prior to that we were pretty sure he was on the spectrum after a few agonizing months of going through exactly what you described in your post…..he is, no he isn’t (back and forth). Great advice for parents who have concerns and that sixth sense that something is not quite right with their little one. Especially, when their pediatrician tells them not worry and let’s give him/her a little more time to “catch up”. I am thankful we ignored our doctor or we would have lost valuable therapy time like you pointed out. Blogs like yours and on-line support groups have been my life line. Thank you for sharing your family’s story:-)

  17. Heather Murray says:

    Another wonderful post! I just connected with another mom who has a newly diagnosed son and I recommended your blog. Thank you for all of your beautifully written posts!!

  18. Ann Kilter says:

    My son played with the lights before he could reach them. Then he turned them off and on constantly. I knew something was up when he was a year old. But I didn’t know what. He didn’t flap his hands, but he did perseverate.

  19. theotherlion says:

    Wonderful post, as usual. May I add that if your child is diagnosed with autism, you may want to have further testing done for fragile x syndrome. It is a genetic disorder that, like autism, is a spectrum disorder, and they share many, many similarities.

  20. Ellie says:

    I’ve just found your blog and love your style of writing and your honesty when addressing special needs. Thank you!

    I knew something was different about my son from about 18 months or so. He had major sensory issues, he didn’t play with other kids as he got older, he fixated on something and obsessively stuck with it. But no one else saw these things as being anything to worry about–doctors, teachers, my parents, my husband, all thought he was “just a boy” and would catch up eventually. And he spoke fine–we understood him, he asked for things he wanted, he spoke in full sentences by two. It was the tantrums that told me something wasn’t right. The meltdowns over little things, or over something I couldn’t even spot! That would go on for hours and hours! Then as he started preschool, it was the dangerous behaviors–bolting out of the room, jumping off of or climbing up on furniture, bumping and crashing into everything and everyone. And even more meltdowns that resulted in his teachers having to call me several times a day to come deal with him (luckily, I worked at his school). I knew something was wrong, but never in a million years thought it was autism! All my Google searches pointed at behavior disorders, sensory processing disorder, things like that. His symptoms never brought up autism pages. Yet, after his diagnosis of PDD-nos, I saw that he had almost all the classic symptoms, just in his own way. He doesn’t flap, he spins. He paces in patterns. He covers his ears, and has huge sensory issues. He licks everything. At 4 1/2, he was still engaged in parallel play, and had no pretend play of any kind yet. He spoke on time and speaks well, but has a complete lack of understanding of pronouns, sarcasm, figures of speech, and an inability to appropriately answer questions.

    I love this post–I would reverberate what you’ve said about insisting that someone listen to you when you know something’s not right with your child. No one listened to me until he was 4 years old and I insisted that someone evaluate him! Regret is something that’s hard to live with.

    • FlappinessIs says:

      You did the best you could. You had a lot of people fighting you. They mean well, but they do confuse things, don’t they? You did get him the help he needed though – which makes you an awesome mom!

    • Jen says:

      My six year old son is similar. He had a speech delay, but I put that down to chronic ear infections for the first two years of his life. Then, there were the night terrors and trouble sleeping. Then, meltdowns – and I know exactly what you mean when there is a minor, or non-existant trigger (as far as we can see) and they last FOREVER. My son also didn’t socialize well, even though he was in a therapeutical preschool for behavior issues (ocd, adhd, anger issues, etc.) and didn’t even begin pretent play until well after he turned 5.

      Now when you look at him, he appears normal at a glance, but when you look deeper, and add up all of his challenges, it really makes me question. I’ve been trying for years to get him tested, and only after moving to a new state have I got a pediatrician who is validating my concerns and he is now on a waiting list while recieving various therapies.

    • Robin says:

      I can totally relate to this, my son is obssessed over things too. Another thing is if he comes home and say sees a book left on the floor by his baby sister and I pick it up and put it away, he will go and get the book and put it back exactly where it was on the floor. I think he looks around and proccesses where everything is when he gets home and is not comfortable when things are moved, even when they do not belong there. It makes me obssessive because I try to make sure everything is put away before he comes home! My son doesn’t lick everything, but he does smell everything!

  21. kerryanne says:

    Wow, I have not long discovered your post, but know you have answers to what I have suspected for sometime. I have a six year old daughter who has special needs she didn’t talk till she was five, she struggles every day with screaming meltdowns and flaps alot, I haven’t understood why till now. Your blog has helped me so much these last few days get a better understanding, my daughter has been under the hospital since birth, as she has had problems from day one. I am seeking answers now and am awaiting appoinment with a genetist and others to hopefully get the answers and diagnosis I have been seeking since birth. Thanks for your posts

  22. Nail on the head, my friend….

  23. momgonerogue says:

    Thank you! This Blog was very thought provoking to me and I was inspired to write about my experience with the signs of my son.

  24. judithornot says:

    And the sooner a child on the autism spectrum is diagnosed, the faster you can start getting them the help they will need to thrive.

  25. Jenn says:

    Great post. Especially the line of it is the child that makes you special. Perfect reminder. Our children remind us of what really matters in life. I have to say that hanger fixation brought back memories. Early intervention is very important. It has helped us tremendously. Wonderful post!

  26. Kayla (Keegan's Mommy) says:

    Had to share this on facebook! I have had some friends ask me about autism cause they have concerns about their child, and this was perfect to share with them!

    • FlappinessIs says:

      Thank you! I don’t know what got me to thinking about it last night, remembering all those “does he or doesn’t he” conversations, but that post flew just flew out of my fingers. I hope it gets even one person to get a screening. 🙂

      • Kayla (Keegan's Mommy) says:

        I’m hoping it might help too! I’ve had three friends ask about symptoms and stuff. My three year old was just diagnosed in July, but I knew he was autistic by the time he was about two. Lol.

      • FlappinessIs says:

        Same thing with us. We still don’t have the official diagnosis – just “somewhere on the spectrum – come back at three”. However, he gets speech, OT, PT, and an Infant Child Development Specialist, so I’m not hung up on the label. He’ll get one of them.

  27. Missy says:

    Beautiful post! You have a way with words and expressing your heart.

  28. Jennifer says:

    Just an interesting side note from our family’s personal experience. We have a 3 1/2 year old daughter that we adopted from China at 16 months old. We knew she had special needs (hearing issues, club feet) and a possible undiagnosed syndrome.
    This past summer after changing pediatricians to one who specialized in special needs children, she was diagnosed with failure to thrive and PDD-NOS (pervasive Development Delay- Not otherwise Specified). PDD- NOS is on the autism spectrum and NOS means they have no idea why she isn’t developing. We were actually thrilled to get this diagnosis since this is what we had felt from the beginning (obviously our daughter had very serious delays, not walking, talking, low muscle tone etc.) We did even have genetic testing done to make sure there wasn’t something that we were missing since she is adopted and we have no family medical history.
    That would have been the end of our search for answers – the answers we had received fit the child we saw in front of us. So we had a plan to help her and we were ready to move forward. I was beginning the journey of researching autism. And then she had a seizure. Out of the blue. She spiked a fever one morning in June, had an incredible meltdown, over the top. Wore her self out and fell asleep. I happened to be sitting next to her while she slept and noticed her start to twitch in her sleep. I am an EMT so it only took me a few seconds to realize she was having a seizure so off we ran to the ER. Fever induced seizure, no big deal, lots of kids get them. They sent us home with the standard drill to make sure she doesn’t spike a fever and to come back if she has another one. Two weeks later another seizure but no fever. That second seizure has changed our lives forever!
    Until a child has more than one seizure and or a seizure without a fever an EEG is not a standard test that is run. Because our daughter had a 2nd seizure and one with no fever the automatic next step was to do an EEG to look for signs of epilepsy. Not good news we were thinking.
    I thank God every day that she had those seizures now because what we found out from the EEG was amazing, frightening, horrifying, and incredible all at the same time. We found out that our daughter has a “rare” severe form of what I call an invisible epilepsy. I put rare in quotes because I am not so sure that it is rare, just rarely found in my opinion. Her disorder is called ESES, Electrical Status Epilepticus of Sleep. Turns out that the actual seizures she had are totally unrelated to the ESES, they just helped us find it. Basically in ESES, when the child goes to sleep instead of the brain quieting down to rest, repair, and grow the electrical brain activity in these children actually increases. Like a million little internal brain seizures. These children are getting no deep sleep. And you will never see it on the outside. These children may be very light or difficult sleepers.
    The reason I am posting this here is because children with ESES are very commonly mistakenly diagnosed with autism. Generally the same age of onset. The child may be developing completely normally and all of a sudden start regressing, losing speech and fine motor abilities.
    I don’t want to give anyone false hope that their child doesn’t have autism, but at the same time I don’t want someone to miss this in their child because ESES is treatable. The earlier it is caught, the more chance that delays or loss of function can be reversed.
    I wish I could give you links to find out more info on this disorder, but there is very little out there. Hope this might be helpful to some one.
    Our daughter is still way behind her peers in development but she has made so much progress since she has started treatment.

  29. Jenni says:

    Thank you again for opening your heart to share what so many parents feel. I had to push for more than a YEAR for a diagnosis. I knew at 12 months, when the lights went out with my daughter, that she had autism. But it took the “experts” 17 months to agree with me.

    As I like to say, when you have met one autistic child, you have met ONE autistic child. They are all unique, just like a typical child.

    Remember when you think something isn’t right with your child, push until you find answers. Whether it is autism or a stomach bug, feel confident that you are doing everything you can for your child. And then smile that God blessed you with her.

    • FlappinessIs says:

      I had more than one conversation having to convince them myself. I don’t mean that they weren’t open, I think they just saw a child who would make eye contact and smile and compared him to their worst care scenarios. What is scary about this – and I wish every pediatrician realized – is that you can knock back regression with intensive therapy. There’s simply no benefit to waiting. What’s the worst that could happen? A typical child might have a few fun and educational therapy sessions? In my dream world, all children would have the benefit of that kind of play anyway.

  30. Amy says:

    As a speech language pathologist with my arms wide open to kiddos and parents facing challenge of ASD… I applaud this post. It needs to written on a pamphlet and put where every parent can reach out and grab it. SOOOO well done!

    • FlappinessIs says:

      If anyone wants to put it on a pamphlet, just let me know. I’ll be more than happy to donate this post. 🙂

      • krissy Bright says:

        First of all thank you for this post. I have a background in SPED and at one point was going into Music Therapy…however life had other plans for me. I just read your post and that was all of the signs I saw and told I was paranoid or worry too damn much. I am so glad I was not the only one who saw these signs and got help despite resistant from family, my husband, friends and her doctor. Now people know I was not crazy when I got a medical and educational diagnosis of ASD for my 3 year old when she was 2 and a half years old. This post should be made into a pamphlet in schools, daycares, and doctor’s offices to make people more aware they are not alone. I know of someone in my area I would love to email this to her and ask if she can print some out for me in pamphlet form. She is a great friend and neighbor who is a graphic designer and printer. Again thanks for making me feel I am not alone in this !
        Krissy Bright

      • FlappinessIs says:

        You have my happy permission to reprint it. Thanks!

  31. Thank you – I remember so much of this. Mostly the grunting, the tiptoe walking, the feeling of just knowing something wasn’t right but thinking I was probably crazy. The evaluations, the fears, the lack of sleep. My boy at 3 had this shoulder shrugging tic that wasn’t flapping but of course was his way of flappingl at 4 years old he would only wear buzz light year pajamas. I mean that is all he would wear. I had to buy 5 pair so he had a pair for each day of preschool and wash repeatedly. Shoes bothered him, they went ‘up and down’ so he would only wear crocs. At 5 an 6 he repeated jingles off the tv – um…repeatedly. We then had to deal with frustration, depression and an IEP in school for agression. More therapy. He is 8 now. We have problems. We have good days and we have bad days. But with diagnosis in hand we fight the good fight and walk through fire for him. He’s my baby boy and he is an amazing kid who will someday do great things I just know it. (he can beat just about anyone on star wars Lego for wii lol)
    Thank you again for your blog. You rock.

  32. Lelah says:

    I think this is a wonderful post. Of course, it is only the tip of the iceberg. The best line is “… a child can still be autistic and not share every common autistic behavior.” My autistic son did not flap his arms, or walk on his tip-toes, or many of the more common ASD behaviors. It was hard for me to get anyone to listen.

    I was searching the internet trying, desperately, to find a way to get people to listen to my mommy instincts. With two older boys, I KNEW something wasn’t right that went beyond personality. For three years I fought family, friends, the pediatrician–even my husband. I finally got a referral (because the specialists won’t see you without a referral even though insurance didn’t care) for a speech and hearing evaluation. That was the first person who told me I had reason to be concerned. I switched pediatricians (despite knowing I had an excellent one, despite this) and got a referral.

    When I finally got my diagnosis, I broke down and cried. Not out of grief, but out of relief. NOW, I could finally get some official help. We worked on therapies at home. I enrolled him in private social therapy and private occupational therapy (although they doubted he was ASD). Nothing–NOTHING–felt better than knowing we were on the right track, at last. High functioning autistic kids are harder to get diagnosed.

    So it is only the tip of the iceberg. If you think, if you question, if you know, FIGHT for your child.

  33. Rachel says:

    Well said. I am putting this post in my back pocket to pull out any time I might meet someone in need. Thanks!

    • FlappinessIs says:

      Please do! In fact, if any doctor’s office, individual, therapist, etc. wants to do the same, just let me know. Parents of young kids need to be aware of autism and not let valuable time pass by.

  34. Kristina Brown says:

    Wow! I’ve read several of your posts lately (just found this blog) and I feel like you’re writing everything I’ve thought, felt, etc. And although it is sometimes a hard journey, I’m glad there are others here to share it.

  35. cutemongoose says:

    Fantastic. You have said everything in a way I wish I could have. Two points I would love to stress that I have tried to explain to people…..get your child screened for autism….it cannot hurt and you might catch it early. And….early intervention is the key. The earlier the better.

    I have lost friends when I have suggested they have their child checked for language delay or (god forbid) autism. I have not been wrong in my suspicions so far. Now I bite my tongue and tell myself it is their journey not mine.

    My son was diagnosed at 3 1/2 with HFA and I did not have a moment of denial. I grieved the loss off the child I thought he would be, but I attacked this new situation with determination. If he had not been my first child I would have noticed the signs of autism earlier.

    Now my son is 11 yo and he is amazing. I credit his amazing progress to all the early intervention he had. I have deffinately become a better parent and a better person along this crazy trip through life with a child on the autism spectrum.

  36. Jen E. says:

    What a wonderful post! When my son was 2, my gut told me that something wasn’t right. That’s so important, too – following mother/father gut instincts. I will also say that I have met some wonderful, amazing people in the autism community and have made great friends. I truly do not feel alone in this as I first did when we received the diagnosis. It’s so important to seek out those community resources because they really do make dealing with all the ups and downs so much easier.

  37. Excellent post!! I found it through a Facebook friend and will share it amongst my FB friends. Thank you for writing about each and every symptom and also sharing your experience with that symptom. I especially thank you for pointing out that if parents have any question at all they should get an autism screening. Awesome points!! I’ve been there too and urge parents to do the same.

  38. From a mother of a 25 year old girl, I wish there was an Internet and your blog when she was 2 years old.

  39. I totally agree.

    With my bio son, I wasn’t surprised, due to his being a micropreemie (born 1 pound 5 ounces), and was told to suspect delays. By 2, I had suspiciions, and when he put his head through a plate glass window from head banging just days before turning 2, he went to his pediatrician who confirmed the suspicions right after his 2nd birthday. She was sympathetic–she had an autistic child too.

    With stepson, I had suspicions, hubby didn’t. Or he didn’t want to…that’s more accurate. It’s hard for a dad to accept that his boy isn’t going to be perfect. And this is a psych RN as well!

    You’re right, it’s not the end of the world. Most days we don’t even really think about autism…we just work on keeping the sanity and going through a schedule and meeting daily needs and keeping things going. On good days we play board games and have good times. On bad, all heck breaks loose. All 3 autie kids play YMCA soccer (and are pretty decent at it when they concentrate) during the spring and fall seasons. They love swimming, 2 of them like gardening, 1 is fascinated in science, 1 loves Nascar and anything car, 1 is learning how to do more domestically inclined things, the middle one helps mom in the kitchen of his own free will, etc. They, like any child, have their strengths and weaknesses.

    The sadness, that is from our own desires and wishes for them to have had a different life. It is our own selfish desires that create our mourning. They didn’t have those dreams before diagnosis….

    The goal for ours is to help them grow and be able to live independently as adults. Maybe be able to go on to college if they desire, or be able to hold down a job. The middle one may not be able to unless things significantly change…he’s so far behind the “norm”… But if they don’t, that’s ok too…there’s organizations that work with adults with delays and they’ll be fine either way. They’ll still be our children regardless, and be there to help.

    Take it a day at a time…so what if dreams change…they are just that–dreams. 🙂

  40. Katie says:

    This post took me back to that scary time when I was seeking answers and support at the beginning. We now have a diagnosis is writing, I diagnosis I knew of all along, it doesn’t stop the uncertainty for my son’s future, or the worries about his current educational or emotional needs, but it does help. It helps me stand tall when he’s stroking all products on the shelves in the supermarket, or when he stops people in the street to tell them about Doctor Who whether they want to listen or not. I understand now why he is the way he is, I am no longer plagued with self doubt and other’s opinions on my child’s development or behaviour. For me the diagnosis brought (along with a huge whammy of grieving) certainty. A fact. My son has autism.

  41. April Carter says:

    You . said . it . all. 🙂

    You recounted the feelings we had prior to our son being diagnosed, the questions, the helplessness, the unintentional lack of support by parents, friends and relatives, the “wait and see” that approach by pedi’s that often results in lost intervention time, the grief, the acceptance, and the realizations.

    Even down to the thoughts that race through your head when you have that sinking suspicion that something just isn’t “right” about your child in that place where you recognize the developmental delay redflags but haven’t yet figured out what they mean, when you start the frantic google search for what it MEANS, usually at times like two a.m. because you are afraid that if you are thinking about it at “normal” times, then it might be more real…or others might continue to gently remind you NOT to “criticize” your child’s “differences.”

    And even down to the serious sleep issues that plagued us for two and a half years that his pediatrician tried to rule as ADHD in a one year old (imagine THAT diagnosis : /) that almost destroyed my marriage, almost cost us both our jobs, and DEFINITELY robbed us of our ability to cognitively function and emotionally heal.

    It’s a journey from “noticing,” to “questioning,” to “voicing concern with confidence where you no longer allow others to deny things FOR you,” to acceptance, validation, and the beginning of treatment which results in hope and sanity.

    And in the end, I would have had it no other way because all the challenges, the fretting, the turmoil, the ROLLER COASTER, really was an experience that brought us closer together.

    Thank you for this and thank you for allowing me to reflect. I love reading these blogs because they help me to put things into perspective–I guess that’s kinda the idea, right? 🙂

    Happy New Year to you and yours!

    • cutemongoose says:

      My son has had serious sleep issues since he was an infant. I could NOT get him to sleep. The crazy things I had to do to get him to sleep……we were desperate. Our neighbors, our relatives, everyone it seemed thought there was something wrong with us that we could not handle this infant. Finally a friend of mine figured out it was not lullybyes he need to fall asleep…it was loud rock music. She took him in her arms, turned up the volume, danced with him vigorously and he was asleep in 30 seconds. This was at 6 months of age.

      We then rocked him to sleep to loud rock music until he was 3 yo and too heavy. Then we used a rocking chair for a while. Then at 4 yo we had to strap him in his car seat and drive around till he was asleep. Next we resorted to Benadryl and finally had to discuss it with a developmental pediatrician. From 5-10 years of age he took various medications to help him sleep. Now at 11 yo he takes Melatonin at night. Without the Melatonin he cannot fall asleep, unless he is really totally exhausted.

  42. cblondie says:

    What a wonderful post, Thankyou!

    I was wondering if you had read Welcome to Holland? This post reminded me of it,
    http://www.our-kids.org/Archives/Holland.html

  43. Another great post! Always good to know early signs, even if just to rule them out.

  44. I found you recently through a Facebook friend. I have three children. My middle child is on the high functioning end of the spectrum, and I can relate to so many of the posts I have spent time here reading. I look forward to reading many more posts from you going forward.

  45. Kelly Givan says:

    Gosh, I love how you write! This seems almost exactly our journey with our 3 year old, just recently diagnosed. I am so grateful to have found your blog.

  46. I love that your blog has gone viral because you are writing wonderful things like this and getting info out there that people need so much! Keep on doin’ what you’re doin’ it’s spot on friend!

  47. Jen says:

    Thank you. There are alot of times I think, he’s normal, he just has (x, y, z) challenges. Then I think to myself, this ISN’T normal. I love my son more than anything (except possibly his little sister 🙂 and I wouldn’t change him for the world. But – I just wish he didn’t have quite so much on his plate to deal with – whether he is actually autistic or not. It might sound crazy, but I am really looking forward to finally having testing done (eta to be determined) just so I know. It’s been 6 years of trying to do everything I can to help him, by treating his individual symptoms, and I just feel there is something missing, something more I should be doing, I just don’t know what.

    I am so glad I found your site. So, thank you again.

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