Saturday, July 30, 2011

Mommy's Miracles: I'm happy.

Mommy's Miracles: I'm happy.: "The reality of my life is a bit hard to digest. It has the makings of a Lifetime movie including cheesy soundtrack. I think most people th..."

I'm happy.

The reality of my life is a bit hard to digest. It has the makings of a Lifetime movie including cheesy soundtrack. I think most people think I spend my days sad and determined.

I am be happy. Everyone has a load of crap that they carry and that makes their life more difficult, I'm no different.

I just chose to be happy.

There were many days that I did/do cry and I still don't sleep through a night but overall I am a lucky girl.

We went to the girls' dance class earlier today. Baby was not feeling it. She was crying and shutting down left and right.

I jumped into the class to help focus her and it wasn't working. I was getting a great workout jumping around like a frog but I couldn't reach her. I felt so frustrated but I kept going and then suddenly I felt a strong presence next to me. I looked over my shoulder and my husband was jumping like a frog too!

He towered over all the little ballerinas in making by at least 4 feet. He waved the ribbons that the teacher handed out with the enthusiasm of the most perfect student. When he jumped gracefully in the air, with the ribbons trailing behind him I lost it. I started laughing so hard that Bugabuga started laughing. Not to be left out, Handsome and the CEO cracked up without any clue as to why they were laughing. The Baby was jarred from her little world and started smiling. She got up from the floor and started twirling with her daddy.

There are numerous occasions that I look at my husband in wonder and I'm just humbled that he picked me.

How can I not be happy?

(And yes, I took pictures. LOL)

Thursday, July 28, 2011

It's reasonable to wonder...

Today was a busy day. I was up early to see my endocrinologist about my thyroid issues. It's always fun to have a sonogram of the neck. I passed the time texting my husband.

Time was stuck on fast forward. I dreaded this day, I put it off as long as I could and then, when I didn't have the balls to take the next step, I gave the contact information to my husband. He made the appointments.

Today we went to see the geneticist.

I was cranky, angry, rude, obnoxious and terrified. We have four Autistic children. It's reasonable to wonder why that happened. Who's responsible? Is it genetic? It has to be...

It's the who's responsible question that turned my blood to ice. What if it's me? What if it's him? Either way, I didn't want to know. I knew that I would be angry if somehow my husband was responsible for a genetic mutation. I mean, really, shouldn't one know if they are a mutating?

The scariest possibility is that it's me. I took it so hard that I was not able to successfully carry a pregnancy without lots of medical help. I didn't want the knowledge that my body failed my children.

Today was a comedy of errors and delays. We ran to each of the girl's schools to pick them up. Each of them are now in different programs based on their level of functioning. We're not taking the easy road on their education. It would be so much easier if they are in one place.

Each school meandered and dithered. Even one of Brandon's therapist got into the mist and delayed us by running to get photocopies of his charts. Really, today? So whereas I expected to be early or at least on time. I was only able to hit two schools by appointment time. I dropped my husband off with Baby, Bugabuga and Handsome and jumped back in the car to get the CEO.
The CEO was strapped in her seat and I was about to pull away when the school secretary ran out. "You have a phone call!"


"I'll stay with her. Pick up the blinking line on phone."

I hurried in and thought to myself, this cannot be good. I look down at the phone and gained a new level of respect for the woman. There are no less than 40 lines and three are blinking. Another office worker tries to help and we lose the call three times. Really?! Come on!

I hate being late.

I finally connect with my husband.

"We're at the wrong office. It's the other one 2 miles away."

"Take a cab! I'll met you there."

"My wallet is in the diaper bag in the car. I spoke with his assistant. We need to be there by 3:00 in order to be seen."

"FUCK!!!!!!! I'm coming."

I raced out. Gave a thankful, stressed smile to the secretary and booked it. We were now 45 minutes late and I'm thanking the Lord in every breathe that I don't have high blood pressure, as it is, I have a splitting headache and I'm about to go to my most hated office. The place is filled with germs and never fail at least one of the kids walks out sick. Damn it!

I get to the wrong office and toss money at my husband, who is standing at the curb, anxiously on the look out. We switch babies because I know a cab will get there faster than I will, because I will need to find a spot. I hate parking in Brooklyn. And if you wonder why I don't just throw the kids in the car-it's because I have a 5 seater car and a 6 seater family. We don't all fit. Ain't that a bitch?

We rush to get to the appointment and I find an awesome spot two blocks away from the office. I run in and in a mad dash, I grab a file and frantically start filling out paperwork.

"Which baby are you doing?"


"Okay, I've got B." and so on etc, until all the forms were completed. We knocked them out in about 10 minutes. I'd like to say that it's because we are speed demons but really, we know these forms like the back of our hands.

"We only have one referral."

"The hell you do. I confirmed yesterday that all three were here. Check with Nelly."

Fifteen minutes later, "We found the referral. Billing would like to speak with you."

Billing? It does not bode well when billing wants to talk to you before an appointment. I walk over leaving my husband to stop the battles for cookies.

An administrator proceeds to tell me that because the kids are covered by two insurances, she has to bill one over the other and that is not the one we put on the paperwork. I'm looking at her like she has 10 heads. We're delaying the appointment because I have too much coverage for them. Lovely.

I'm being my nicest-okay well, I'm not spitting or cursing; that should count for something.

"I appreciate your position. But here's my position, it took four months to get this appointment. We are seeing the doctor. I don't have much more to suggest to you other than get it done. Are we clear? Fantastic! Thank you!"

I walked out and hoped to God that we would actually be called.

I sit in the waiting area and watch a little girl steal a cookie from the CEO. She smirked, gave her a little push and turned her back to her. I'm explaining to the child that we don't steal and looking for a mother to make sure the kid can have the cookie. No mother in sight and the girl had a real entitled attitude. Hmm. I wasn't impressed.

I walked away and left the CEO to her own devices like the other mother had done with her daughter. In the seconds that I turned, it seems the cookie was on the floor and the little girl was crying. The CEO is not one to mess with, and if the kid wasn't a little thief without parental supervision, I may have had an opportunity to say to the mom, "Be Careful. My daughter tends to rage because of her ASD." Not paying attention or really giving a shit, bully for you.

I counted to 10. I need to relax. I hear our name called. My cavalier attitude actually worked!

The kids walk in a line and get weighed. We do all the regular triage stuff and then start walking down the hallway to the room.

I admit, my children are a sight. They are pretty much the same height and the same age. People cannot help but stop and stare.

I see a line of doctors watching us walk. My skin is crawling. They all look so excited to see us and I begin to feel like a specimen rather than a patient. They are looking at us the way I look when I see a huge non-returnable sale or my husband when he hears a perfect radio break. The doctors are having a work-gasm. There are four autistics with the same genetics walking into their office and they get to study their DNA. OMG! They can barely contain their excitement. If I could draw a picture, it would be about 12 doctors surrounding me with fangs like wolves, saliva dripping from their mouths. As you can tell, I was in a very POSITIVE mood.

The kids were being rambunctious. Every doctor looked at them lovingly, dissecting every little move they made.

The appointment lasted about three hours.

We tried our best to keep them occupied but I doubt that patient bed will ever really ever lose the orange crayon. We're in the mist of potty training so that really took the excitement level up another notch. We plied them with juice to keep them occupied- in hindsight-not our most brilliant plan.

Finally, the head geneticist comes in. My hands are shaking at this point. I don't want to know what he thinks; I want to get out of here.

He begins speaking.

"We're going to run a battery of tests. I think there may be eye issues. I want everyone to see the following specialists: cardio, ga-"


The CEO, being held in my husband's arms, lost control of her bladder. The urine splashed all over the floor, my husband, me, the doctor.

We barely skipped a beat. Consoling her for the accident and stripping her clothes off and throwing on the extra set in less than a minute. We continued to talk to the doctor and listen to everything he said. He focused on me, "Let me see your ears. I'm going to examine you."


Why am I getting examined? He checked my ears, neck, eyes and back. My hands are shaking again and I'm sweating. "What are you looking at?" giggling nervously.

"Here is my theory. I believe there is a genetic mutation. Your sons tests have come back normal. This may not explain the Autism but it may explain your health and them. We will check Bugabuga. More than likely you have the same mutation as they have but it is not very severe for you. If you have it, which I believe you do, there is a 50-50% chance that your children have it. We'll do your blood tests after Bugabuga's test are complete."

And there it was.

It's me.

Saturday, July 23, 2011

Have a little faith.

When life throws an unexpected curve, it's hard to shake it off and move forward. I would be dishonest if I said that I was shitting rainbows at the thought of having special needs children, more likely, I was shitting bricks.

I had helpful friends and family suggest seeing a psychiatrist. "You'll need an anti-depressant at least and maybe some anti-anxiety drugs too. Hell, I would."

There may have been some truth to that. I probably could have used an anti-depressant, because the truth was, I was depressed. But I'm a tough little bitch that will wait to see a doctor until a limb is hanging off at a funny angle. I'll fight tooth and nail not to see a doctor and the only appointments I go to are made by my husband.

I needed to find my way. Daily I woke up sad and overwhelmed with the kids needs. I needed to take care of the fact that I was constantly dizzy from high blood pressure. 'Try meditating."

My constant replays were, "When? How?"

I dealt with the stress in the only way that I knew how. I ate all day. Any time something bothered me, I ate toast, anything. I stuffed down my emotions. It wasn't a good way to live.

I needed help and normally, usually I would pray for peace. But at this point in my life, I was rip-roaring angry. For the first and only time in my life, I faltered in my faith.

"If there was a God, this wouldn't be happening. I pray every fucking morning and every fucking night. For what? To give thanks for a life of no peace? I'll never die peacefully knowing that they need help. There is no God. Fuck going to Church. Fuck it all. I'm done. He has forsaken me first."

Just saying the words made my heart beat fast. My body revolted against what my mind was saying.

When a traumatic event takes place, everyone needs an outlet. I was no exception.

I believe that to grow as a person you have to face true darkness in order to appreciate the beauty that is surrounding you.

I needed a break, my husband could see it and suggested that I go grocery shopping to calm down.

That's when it happened. I found God in the meat section of Pathmark.

I was looking at reduced chicken-it was the only type we could afford. I was so angry that I couldn't afford to buy the chicken breast that is my favorite. I picked up package after package to make sure that the meat wasn't off. I settled on one that was $2.94.

I walked past the fresh vegetables-another favorite and walked down the canned food aisle. Beans go farther than other proteins. I can't stand beans.

I angrily loaded the cart with the sale canned vegetables. My next stop was the baby aisle. Time to pick up diapers and formula. One can of Neutramigen cost $34. I reached for the diapers and saw that the price had gone up. They were $22 instead of $19. I couldn't afford it.

I looked in my cart and the reduced chicken was mocking me. I turned the cart around. Ready to cry, I added the diapers and walked over to the meat section.

I put the chicken back and straightened my shoulders. "It's just chicken." I thought to myself. We needed $160 for doctor visit co pays that week and $294 for my husband's train ticket so he could work. We weren't going to have nearly enough. "It's just chicken."

I slowly turned away. So angry with the world and proceeded to slam my cart into a woman standing behind me. It was 12:3o in the morning. Why was someone so close? I started to say something really nasty and looked at the fool that was invading my personal space. I made eye contact with a nun.

A nun-at 12:30 in the morning-in Pathmark.

"Why are you so angry? I can see it on your face."

I snorted. "If you only knew, Sister."

"Tell me."

"What?" I'm losing it, there is no way that a nun is in Pathmark at 12:30 am. Don't they have a curfew?

"My child, you've become jaded and hardened. What is wrong? Unload your burden and you'll feel better."

"Sister, my life sucks. I can't afford a piece of fucking chicken because I have to go to four fucking doctor appointments with my four Autistic children and what sucks more is that I could have fit in two more doctor appointments but I can't afford to bring them. I worked my ass off to have a good career and I walked away from it to help these children that don't speak, rock continuously and slap the shit out of themselves. I've lost myself. I'm so fucking angry and where the fuck is my God? Like an asshole I went to Mass every week, for what?"

I stood in front of the chicken and looked at her expectantly. I was daring her to tell me that it will be okay.

"I have no answers for you. You've been given a heavier load than most. I'll keep you in my prayers. God makes no mistakes. He's in every breath and every thought, every smile and every tear. Have a good night. Peace be with you."

I was spent and more than a bit embarrassed. There was a stock man looking at me strangely-more than likely because I cursed while speaking to a nun.

I walked to the checkout defeated. I paid for the groceries and had 12 cents left over. I loaded the car and went home.

The house was quiet when I arrived. I unloaded and started organizing the kitchen. The kids would get so upset if the cans didn't line up perfectly. The last bag was especially heavy. I looked down and in my hand was a fresh chicken breast.

I closed my eyes. "God, forgive me. I'll never doubt you again."

Never Stop Dancing

I'm continuing our quest of having a normal childhood. We're at dance class.

"Jump like a frog." Good.

"Run like a pony." I heard a cry. I know it's one of mine.

"I fell down!" Bugabuga exclaimed.

"it's okay girl. You're okay." Baby patted her back.

"Awwww. You okay?" the CEO asked.

"I fell down!"

Miss Ana quietly looked at the dynamic between the girls as I silently watched her to see her reaction.

I'm hoping that she doesn't coddle her. There is a fine line between supporting and coddling. Please don't coddle.

"Everyone falls. I fall sometimes. You have to get right back up and keep dancing. No matter how hard you fall, it's part of your dance. Never stop dancing!"


Friday, July 22, 2011

What would I tell parents that are facing a possible diagnosis

People ask me what they should say to their family members about a diagnosis. They ask me what to say to get them to get the children tested if the parents don't see any issues.

I don't know exactly what to say but I know what NOT to say.

DON'T Say:

*Something is wrong with the child.

*The child is delayed.

*The child will speak if they speak more to them.

*It's a cry for attention.

Instead say:

*The child is very quirky and then point out a hard marker like rocking.

*The alphabet seems to be a bit hard for the kid, maybe he/she needs to take it a little slower.

*The child is quiet.

*You're doing your best.

*Does the doctor have any strategies to deal with that behavior? They are professionals. They have experience with all types of personalities.


This is definitely a case of killing the messenger. The best thing to do is support the parent. Babysit. Don't criticize. Trust me, they are baffled as to why things seems so hard. Their child is perfect in their eyes. And ultimately, a parent needs to make peace with the fact that no matter how hard they try, no matter all the things they pay extra attention to to make sure that their child doesn't cause a disruption and be an active part of the family, they will need a professional to help them understand their child.

That's the hardest part. I remember listening to the first therapist telling me that Bugabuga was functioning at a 0-3 month level in speech and she was almost 14 months old. I couldn't understand her words.

I remember walking into the neurologist's office and hearing her say, "Yes, I agree. Hypotonia. Developmentally immature." I remember nodding and being too ashamed of my lack of knowledge of the terminology to ask questions. I remember the shock of being given a follow-up appointment. Why did she need to come back when she was fine?

"I guess that's a standard practice." Denial is beautiful in its intensity.

I remember coming back for a 4th visit and her mentioning the phrase spectrum disorder. She didn't say that she had it but she just mentioned that it may be a possibility.

I remember thinking that she was way too pretty to be on the ball. LOL. Anger is vicious, although she is pretty. LOL.

I remember the CEO waking up one morning silent after speaking simple sentences without a problem. I remember the paralyzing fear that she had a seizure.

I'll never forget the pediatrician's expression when I ran into his office without an appointment, crying that something was very wrong. I wasn't ushered back to the waiting room with the triple stroller. I was escorted into a room and the doctor followed right behind.

He checked her thoroughly and made the medical assistant get a neurological appointment for the same day.

I don't remember the hours between that meeting and walking out of the neurologist's office. I remember she was wearing a green shirt, black skirt and black boots. She ordered a battery of tests and referred me to a behavioral neurologist, or as I like to call her, a special specialist.

She called me Mrs. Moronta that day. All the other meetings, she was friendly and caring. On this day, I saw the doctor stone face that medical professionals get when they aren't ready to tell you something but they know or have an inkling of something.

She said AUTISM is a distinct possibility.

I remember nodding and holding a stack of referrals. I remember looking down at the CEO and watching her rock her little body back and forth so hard that the carriage was about to tip over.

I was in shock. She was perfect.

I remember 6 months later bringing Baby in to see the neurologist to show the therapists in the house that she was okay. I remember walking out with paperwork saying PDD-NOS.

I remember the doctor taking my hand and asking if I was okay. I remember looking at her and saying, "No, but I will be."

I remember coming to see her with my son. I saw him rocking and I was so frightened that I could barely breathe.

I remember playing it so cool but she knew. "I am so sorry. Let's discuss the types of therapy that will be the best for him at this time."

I remember my hands shaking when taking all the paperwork. There is so much paperwork. That was the only outward sign of my emotion. "What's another one, right?" I said to make a joke.

I remember her giving me a hug. "It'll be okay. You'll see with therapy, he'll do just as well as his sisters."

She was right.

There is nothing more scary than the idea of something you don't know or understand. The most important thing to realize is that a diagnosis is not a reflection of you, your spouse, your family or your child. It is not giving up the dreams for your child. It's learning how to make all your dreams come true in a way that is meaningful to your child.

I thought for a time that my dreams for my children were dead and broken but they are not. Many people describe autistics as living inside a box, everything needs to be orderly and symmetrical. When I felt that my dreams had been shattered, it was because I was afraid to think outside of the box myself. Once I was willing to think of ways to accomplish our goals, I realized that they are going to do everything they hope to do because my husband and I, along with their team of talented doctors were going to help us find a way to make them happen.

Their potential is limitless, just like always.

Monday, July 18, 2011

It's all about Communicating.


"Why do you want to learn sign language?"

"Um, what if I meet someone who can't talk and hear me and they're lost? What if they need help? Everyone needs someone to help them. I can do it. I can help them." - The eight year old me.


"Why do you want to work with Senior Citizens?"

"They are so interesting. I learn so much. Besides, they need friends. I can be their friends." -The 14 year old me.


"I think you would be exceptional working with special children. Try it."

"I can't do it. I can't handle it. They need so much. What if I'm not as good as they deserve?"-The 20 year old me discussing student-teaching in an Autistic classroom.


"Why do you work with the most difficult, untrained animals? What if you get injured?"

"Everyone deserves to be loved and feel kindness. Everyone, cats and dogs, can show love and kindness once you find the way to communicate on their level."


"You need to start using Sign language to communicate with her. You have to use another means of communication if she doesn't develop the ability to speak."

"She WILL speak. I'll try sign but I know she will speak."


"Mow. Mow." Accompanied by the sign for "More." Bugabuga's first sign! My baby was communicating with me! I smiled and cheered. I hugged her and danced around the room. She was so proud of herself. She signed over and over, faster and faster, "More." I cried and my smile was frozen on my face. "Great job, Bugabuga! Great job! I love you!"

She tottered over to her little pocketbook laying on the floor, focused on her favorite toy. Her focus, razor sharp on the latch, I am forgotten again.

We communicated. That's what matters. We communicated.

I wanted her to speak. I was so proud but I wanted her to speak.


"Ma... Maaaa.... Ma!" "Mama!"

I started crying, so hard that my voice was broken. I signed, "More!"

Thursday, July 14, 2011

"Mommy, you short."

My husband is tall. My children are tall.

I'm short and I have a complex.

I organize my life around my height. Pots in the lower cabinets, spices on the counter. The cabinets on the walls are for storage because I have to pull out a step ladder to reach them. It's interesting seeing the world through a 5' 0" frame when the world is made for people a minimum of 5'4".

I always figured that my kids would outgrow me at some point, probably before they were teenagers but as the years started passing, I realized that they may be in 1st or 2nd grade!

And that, in case you don't realize it, is not cool.

Baby: "Mommy, you short."

"I know honey. I was born that way."

Bugabuga: "Don't be sad, Mom. You'll get big too."

"I'm not sad. I'm happy, but short."

CEO: "Awww. It's okay, do you need a hug?"

"Sure. Big hugs!"

Handsome: "Mommy, you short? Uh oh. Oh no!"

I actually always enjoyed being short. People are always nice when they reach for things for you. I can slip into the train quickly because most people are looking over my head. I have a huge personality, just packaged in a short frame.

Baby: "Don't worry mom, Daddy do it. He's tall, you're short."

Bugabuga: "Mom, why you short?

CEO: "Awww. Do you need a hug?"

Handsome: "Daddy, tall! I tall! Mommy short."

Every day, I hear how short I am. And as I look at the CEO, who is only 18" shorter than me, I think, I need to start wearing high heels!

The kids are so helpful, reaching for things that I can't reach. I hate to break it to them that they are still smaller than me. They are so considerate of my special needs that arise with being a short person. And then I say, like they say to me, when I get too helpful,

"I do it myself!"

Sunday, July 10, 2011

How did this happen?

"How did this happen?"

That question runs through my mind at least once a day. There are several schools of thought. The vaccine group is the loudest and most controversial. I don't believe it for a minute. I think the timing of symptoms and the shots are very close and everyone needs to blame something. Why not blame the shots?

I believe this happened because I used fertility drugs. I remember with frightening detail signing a waiver about autism. I remember questioning it and the doctor saying, "Is there anyone in your family with Autism?" I said no because no one shared that information with me. If I had known, I may not have taken that drug. I probably would have because I wanted a family so badly but I would have made a more educated decision. I can still feel the pen in my hand as I signed my name confidently. Autism will never happen to me.

I know many, many women that have used fertility to get their dream baby. I've read the studies that show that fertility babies are at higher risk for premature labor and developmental delays. I didn't care.

I wanted a baby. And with fertility, you can get a baby but not necessarily a healthy one. Too many parents are becoming versed in OT, PT and Speech Therapy jargon. I feel for the parents that are so excited to hold their little blessing and then find out that they may not have all working parts. It's not supposed to be this way.

I think that Autism is one of the best disabilities to get. Sure, my kids think differently but overall they are healthy as horses. But I see children with organs failing or not working correctly. Diseases that may shorten their little lives and I feel worry and anger toward the specialists that don't explain that the parent path may be rougher and shorter.

But in the quiet urgency of desperation to have a family, even being handed a crystal ball and seeing the potholes in the road, I would have still chosen my children, diagnosis and all. Because nothing in life beats waking up to a loving family, filled with hugs, smiles and laughter.

Saturday, July 9, 2011

Aunt Jane

I always wonder what my Aunt Jane would say about what I've become; how my life has turned out.

Growing up I thought Aunt Jane was every one's aunt, but in reality she was my grandmother's aunt. She never had children herself. She was married to a kind man named Uncle Pete. I grew up spending a lot of time them. We had a grand old time shopping. I remember being about 8 years old and Aunt Jane giving me a shirt that had "Silly" on the back. I was so concerned that the printer made a mistake! It should have said, Cilla. I remember asking her if we should go back to the store because I'm not silly. She looked like she was going to crack up. I was so confused. I think I even cried. Little did I know that she knew me better than I knew myself.

I am silly. I love being silly. I wish I still had that shirt. For that matter, I wish Aunt Jane was still here.

It's funny how you adopt the smallest things from people that you spend time with but you never realize that their mannerisms became yours until a sudden moment of clarity.

Tonight I was watching 101 Ways to Leave a Gameshow with the kids. I love the absurdity. It's silly, like me. The kids and I were sitting on the couch laughing and then the CEO, shifted to lay down.

"If you're laying down, you must be tired. Go to bed. A couch is not for laying on."

Where the hell did that come from? I have no problem with laying on the couch. Never did. In fact, when I was 11 and stayed at Aunt Jane's house for a few weeks, I did the same thing and she said,

"If you're laying down, you must be tired. Go to bed. A couch is not for laying on."

It was a sudden moment of deja vu.

I missed her so much. As I grew older, I would visit just to say hello. I loved sitting in her chair listening to the radio with Uncle Pete, while she made a huge meal for dinner. I loved the bologna sandwiches for lunch and the super fresh salads in the summer.

Aunt Jane was the first brave soul to get in a car with me when I got my license. I drove right to her house and picked her up so we could go shopping. Two blocks into it, I went down a street the wrong way. "We don't have to tell your mother that now, for sure." LOL.

She's been gone for quite a while and my kids missed out on knowing an exceptional woman but maybe they are getting a bit of her when I make bologna sandwiches and huge salads. And maybe they are getting more than that...

She lived a full life with Uncle Pete, despite his blindness, and we're living a full life despite Autism.

Sunday, July 3, 2011

CDC Statistics for Autism

CDC Statistics

Data & Statistics


  • It is estimated that between 1 in 80 and 1 in 240 with an average of 1 in 110 children in the United States have an ASD. [Read article]
  • ASDs are reported to occur in all racial, ethnic, and socioeconomic groups, yet are on average 4 to 5 times more likely to occur in boys than in girls. However, we need more information on some less studied populations and regions around the world. [Read article]
  • If 4 million children are born in the United States every year, approximately 36,500 children will eventually be diagnosed with an ASD. Assuming the prevalence rate has been constant over the past two decades, we can estimate that about 730,000 individuals between the ages of 0 to 21 have an ASD.
  • Studies in Asia, Europe, and North America have identified individuals with an ASD with an approximate prevalence of 0.6% to over 1%. A recent study in South Korea reported a prevalence of 2.6%. [Data table Adobe PDF file]
  • Photo: Prevalence of ASDs with 8 Year oldsApproximately 13% of children have a developmental disability, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism. [Read articleExternal Web Site Icon]

Learn more about prevalence of ASDs »

Learn more about the ADDM Project »

Learn more about the MADDSP Project »

Risk Factors and Characteristics

  • Studies have shown that among identical twins, if one child has an ASD, then the other will be affected about 60-96% of the time. In non-identical twins, if one child has an ASD, then the other is affected about 0-24% of the time. [1]
  • Parents who have a child with an ASD have a 2%–8% chance of having a second child who is also affected. [1]
  • It is estimated that about 10% of children with an ASD have an identifiable genetic, neurologic or metabolic disorder, such as fragile X or Down syndrome. As we learn more about genetics, the number of children with an ASD and an identifiable genetic condition will likely increase. [Read summaryExternal Web Site Icon] [Read summaryExternal Web Site Icon]
  • A report published by CDC in 2009, shows that 30-51% (41% on average) of the children who had an ASD also had an Intellectual Disability (intelligence quotient <=70). [Read article]

Intelligence quotient (IQ) of children aged 8 years with an autism spectrum disorder (ASD) for whom psychometric test data were available,* by site and sex (IQ) score-Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2006

Intelligence quotient (IQ) of children aged 8 years with an autism spectrum disorder (ASD) for whom psychometric test data were available, * by site and sex (IQ) score-Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2006[D]

  • Studies show that 5% of people with an ASD are affected by fragile X and 10% to 15% of those with fragile X show autistic traits. [Read summaryExternal Web Site Icon]
  • One to four percent of people with ASD also have tuberous sclerosis. [Read summaryExternal Web Site Icon]
  • About 40% of children with an ASD do not talk at all. Another 25%–30% of children with autism have some words at 12 to 18 months of age and then lose them. Others may speak, but not until later in childhood. [2]


  • The median age of earliest ASD diagnosis is between 4.5 and 5.5 years, but for 51–91 percent of children with an ASD, developmental concerns had been recorded before three years of age. [Read article]

  • Studies have shown that about one third of parents of children with an ASD noticed a problem before their child’s first birthday, and 80% saw problems by 24 months. [Read summaryExternal Web Site Icon]
  • Research has shown that a diagnosis of autism at age 2 can be reliable, valid, and stable. [1] But despite evidence that ASDs can often be identified at around 18 months, many children do not receive final diagnoses until they are much older. [Read articleExternal Web Site Icon]

Economic Costs

  • Recent studies have estimated that the lifetime cost to care for an individual with an ASD is $3.2 million. [Read articleExternal Web Site Icon]
  • Individuals with an ASD had average medical expenditures that exceeded those without an ASD by $4,110–$6,200 per year. On average, medical expenditures for individuals with an ASD were 4.1–6.2 times greater than for those without an ASD. Differences in median expenditures ranged from $2,240 to $3,360 per year with median expenditures 8.4–9.5 times greater. [Read summaryExternal Web Site Icon]


  1. Boyle C, Van Naarden Braun K, Yeargin-Allsopp M. The Prevalence and the Genetic Epidemiology of Developmental Disabilities. In: Genetics of Developmental Disabilities. Merlin Butler and John Meany eds. 2005.
  2. Johnson, C.P. Early Clinical Characteristics of Children with Autism. In: Gupta, V.B. ed: Autistic Spectrum Disorders in Children. New York: Marcel Dekker, Inc., 2004:85-123.

Friday, July 1, 2011

Sometimes you just cry.

Most days I'm filled with optimism and hope. Most days I can power through any difficulty and it will roll off my back. Most days, I have words of wisdom on handling special needs and challenges. Most days I'm fine because I have everything I have ever wanted.

And some days, things get a little bit too hard. The tantrums and silence are too much. While I gently and firmly hold a flailing baby and she makes contact with my nose and I feel the instant pain as my skin tears open and my nose begins to bleed.

I've got nothing. There are no wise words. There is no comfort for me. I slip into my mommy survival zone, rocking and soothing, repeating over and over in my head,

"God grant my the strength. God grant me the strength. To accept, to accept. Please help me."

I feel so angry. I don't understand. So I pray and pray and I wait to feel the calm.

And once they are all in bed sleeping, I take a deep breathe and cry until I can't breathe. Sometimes, that's the only thing that makes sense.

Sometimes, I just cry.