Expert: Jene Aviram - 2/15/2009

Question
QUESTION: Hi. I have a 40-month old daughter who many people, including her pediatrician, suspect of having an autism spectrum disorder. She has been delayed in several of her physical and mental development. She learned how to walk at 18-months and spoke her first words at 28-months. A few of our relatives says that she may just be a late bloomer just like her grandfather who is very normal now but began talking when he was 5 years old or her uncle who spoke his first words at 3 years old.

We actually consulted a developmental pediatrician when she was 24-months (back when she did not speak a single word). She said it's still to early to make a diagnosis but it is possible that she is in the autism spectrum because of some delayed physical and cognitive development. She said her "age" for these areas was at the one-year old age. She referred us to a speech therapy school. My daughter only attended 2 days of session because of financial reasons (our insurance, we learned eventually, did not cover it) and some famly problems. Fortunately, after just a few months, she finally began speaking her firsts words.

My daughter started pre-school in a regular school about 4 months ago. The teachers told us that she does not interact and does not make eye contact with them nor her classmates. However, she always interacts with me and her dad, and with people she's very familiar with. She makes good eye contact with us too. She loves to say a word and then wait for us to repeat it. She also "talks to herself" using words she knows and using her own "babble" language. She loves to be sung to, be carried, and be played with. When she gets excited or happy, she makes a long "mmmmmm" sound and stretches her arms forward. This is the only thing I've notice regarding repetitive behavior. She's not affected with any change in environment or things, and she actually does not like to keep things in order. When she gets mad, especially when we don't know what she likes, she would throw a small tatrum. But I think this is just her showing her frustration for not being able to communicate what she wants.

Until now, my daughter does not know how to write nor color, cannot put two words together, cannot understand two word phrases. However, she has good grasps of vocabulary but mispronounces some words and still cannot make the "L" sound. She also does not know who Mommy and Daddy is. She confuses Mommy, Daddy, and her name. She calls me Daddy sometimes and calls her dad Mommy or her name sometimes. However, she does not make any mistakes in identifying Elmo, Big Bird, Zoe, Cookie (for Cookie Monster), Grover, Barney, etc. She also knows all the basic colors, shapes, the complete alphabet, numbers 1-12, many animals, cartoon characters, parts of the body, some things around the house, etc. She's actually good in memorizing and usually says what's going to come next after watching some of her Sesame Street movies, sometimes after only watching it one or two times.

Only recently, about two month ago, did she use command words like "TV" when she wants to watch television, "piggy" when she wants to be piggy-backed, and "milk" when she wants milk. However, she only knows and uses a handful of these command words. He can follow directions like drink, close the door, stand, and lie down.

We have another appointment with another developmental pediatrician this April. I cannot wait that long really. I cry every night thinking where I've gone wrong. I blame my husband sometimes for not being able to have our daughter continue with her speech therapy last year. I love my daughter dearly, no matter what. I'm just scare about what the future would hold for her.

My question is, is there a chance that she may not be autistic? That she may just be a late-talker? Did you ever see these similar kinds of bahaviour in individuals who eventually grew to become "normal" people?

I promise my daughter and myself that I will do everything possible to provide her with any therapy, help, or need she may require. I love her with all my heart. But if in case she does have ASD, would it be possible for her to lead a relatively normal life? i.e. get married in the future, have her own family, get a job, finish college, etc.

Thank you so much for taking the time to read my letter.

ANSWER: Hi Jenny,

My heart goes out to you.  I understand the emotional turmoil you are going through and I'd like to set your mind at rest.  

Your daughter is able to talk.  She clearly has relationships with those close to her.  Regardless of whether she gets a diagnosis or not, your daughter certainly has all her options open.  There are many people with autism who go to regular school, go to college, get a job, get married etc.

While I certainly can't make a diagnosis over the Internet, there are many qualities you mentioned that are typical to people with autism.  It's great that she is starting to make demands, even if it's just in single words.  Encourage that as much as you can.  Try and get her to request items before you give them to her.  I think it's wonderful that you are going for further evaluation. This way your daughter will get the help she needs.  I'd like you to read this article called "How do you know if your child has autism?"  I think it would help you.  You can find it at http://www.nlconcepts.com/autism-howdoyouknow.htm

Jenny, I can see you love your daughter with all your heart.  When we fear that something is wrong with our child, we feel guilty, and angry and sad and desperate.  Everything you are feeling is totally normal.  You want to fix this.  You did nothing wrong.  You were given a special daughter because you and your husband must be very special people.  Your husband is doing the best he can.  He loves your daughter too.  It's not his fault.  I'm sure he would change things in a minute if he could.  What developmental pediatrician did you go to when your child was 24 months?  Are you returning to the same person?  If your daughter showed significant delays, she should have been entitled to early intervention and services at NO charge.  Please see this link http://autism.about.com/od/childrenandautism/f/WhatIsEI.htm

Jenny, your daughter will soon have an extensive evaluation.  Is there any way you can get the appointment pushed up before April?  She might not get diagnosed but even if she does I'd like to stress again that autism is NOT Rain Man.  But it is a different way of life.  There are many accomplished people on the autism spectrum.  Please go to this site and read some interviews of people on the autism spectrum.  There are also some great articles here that would be of great benefit to you. http://www.nlconcepts.com/autism-spectrumlife.htm

I hope this has been helpful. Please let me know if I can answer anything else.

Jene Aviram
http:/www.nlconcepts.com





---------- FOLLOW-UP ----------

QUESTION: Thank you so much for your response. Although it's been very difficult, I'm now beginning to accept the possibility that my daughter has some type of autism spectrum disorder.  Hearing kind words and encouragement from you is a great help in these very trying times. Your article was wonderful.

When we brought our daughter to a developmental pediatrician when she was 23-months old and spoke almost no words, she gave our daughter a diagnosis of "probable PDD-NOS" and recommended her to attend occupational and speech therapy.  She only did for two sessions but we had to stop it due to a couple of problems. We are going to see a different developmental pediatrician this April 14. We tried to have it scheduled earlier, but there were no more slots available. I will try to research more on the EI program.

I would like to share a few more things with you. Maybe you could provide some feedback regarding these. One thing I noticed about my daughter is that she could not put two words together. Even though I ask her to say two words like Sunny Day, she would just say Sunny. If I say Sunny, she would then say Day. But she will not say the words “Sunny Day” together and would pull a tantrum after a while of asking her to do so. So I just stop pressing her. But she loves finishing my songs with the last syllable of a line. For example, I would say “Sunny day sweeping the clouds a…” then she’d say “Way.” Also, if she wanted me to sing her a song, she’d say the first word of the song like “Sunny” for the Sesame Street song and “Somewhere” for somewhere over the rainbow. But we heard her a couple of times when she’s alone singing the alphabet song, albeit with some mispronunciations and a few skipped letters here and there. She could even sing the end of the alphabet song like this “na a know ma ABC nes ta won sing wee me.”

Thank you for the links. I’ve been very busy reading them, and they are very insightful and informative. Just a treasure of information.

Thank you again for your time and for sharing your expertise to people like us.

Best regards,
Jenny Gordon


Answer
Hi Jenny,

Nice to hear from you again.  Your daughter certainly has proved that she can put two words together.  It's all in the motivation.  When she starts therapy, you'll be amazed how quickly this will change.

By the way, not wanting to put two words together is more common than you'd think.  But I've seen this change hundreds of times and it will change for your daughter too.

You can get a head start by finding things she loves and using them as motivators.  We all do things for motivators.  An example is our pay check.  Does your daughter love a particular toy?  Or food?  Let's say she loves chocolate chip cookies.  Have one handy and ask her if she wants you to sing "Sunny Day."  Then while you have the cookie in her view tell her to say "Sunny."  (You know she can do this and you want her to succeed).  Once she say "Sunny" praise her and give her a piece of the cookie.  You can repeat that a couple of times so she gets the idea that if she says the word, she gets some cookie.  Then ask her to say "Day".  Praise her every time.  Make a really big deal about it and give her a piece of the cookie each time you ask her to say it and she follows through.  Then ask her to say "Sunny Day."  If she says it, go absolutely wild with joy and give her some cookie.  If she won't say it, she doesn't get some cookie.  Simply tell her again to say "sunny day."  She must know that you're firm and she's never going to get that cookie unless she says it.  If she absolutely refuses and goes into a tantrum, simply walk away with the cookie.

You can also do this process more naturally, for example if she wants to play with her doll, you can hold it and ask her to say "doll"  You know she can do this and you want her to see that she gets her doll if she completes the request.  During her play, interact with her and at some point casually pick it up.  Request that she says "doll" again and then give it her with big praise.  Then you can begin insisting on a little more and ask her to say "Want doll."  If she doesn't, then she doesn't get the doll.  If she says it, lots of praise and give it to her.  Your daughter will soon realize that using language can bring her lots of great things.

I can tell your daughter is smart and you're a very caring Mom.  Look into Early Intervention providers in your area so that you'll have therapists available if your daughter needs services.

I wish you great success and happiness.

Jene Aviram
http://www.nlconcepts.com