Wednesday, February 25, 2009

#1 What made you first suspect your child needed to be evaluated?

For us, it was Jack's behavior at preschool when he was three. At home, he seemed reserved and "good," but at school, he shut down and refused to cooperate with teachers, to sit in circle time, to play with other children, or to acknowledge their greetings. At the end-of-year parent conference, his teacher said that while he was making progress, he wasn't closing the gap with his peers. I called to schedule an appointment that day. I later learned that many early warning signs of autism showed up very early with Jack, but because my husband and I didn't know what they were, we had no idea they meant anything at all.


Unknown said...

Little things started adding up. My daughter had started saying a few words and showing understanding of language - but then that progress stopped and then regressed. She wouldn't respond to her name, although I knew she could hear because she'd run if she heard Barney on TV in the next room. Other kids her age showed more awareness of the environment around them. It was a 7 month wait before we could get to the developmental pediatrician and have our worries confirmed.

Susan Raihala said...

Thanks for posting, Jane. Jack also had a language delay (no regression), but we had him evaluated by SLP at 27 months. She said that as long as he was using 3-word sentences by age 3, he was fine. And he did use 3-word sentences...and a lot of scripted language. That was before we learned about delayed echolalia.

maiahs_momma said...

Our son developed normally until he was about 3 years of age, and that is when odd things started to occur. Like routine was essential, clothes bothered him, vocabulary was slipping away, he'd have 10 meltdowns a day, he would hit himself in the head, only talk about one topic (balloons or aliens) for days/months at a time. He wasn't behaving like his older brother or any other child his age. He also wouldn't dress himself, I had to dress him until one day I put pictures on the wall of his clothes in the order I wanted him to dress in. The next morning he dressed himself, no help!! I am also trained in Early childhood education and haven't seen this in a typical child. We are still on the "wait and see" what happens, because our son is so high functioning.
He is on the gluten free diet (has been for 6 mos), the changes in him are amazing...if he goes off his diet at all then look out. He will go from being verbal to non verbal in a short time period.
We are in "limbo" not liking it here, and don't understand why we have to "wait and see" when Early Intervention is key.
Thank you,

Anonymous said...

Wow! This is a great idea. My answer will be long and will take a lot of time and thinking, but I will send it.

PS... I sit on both sides of the fence. I'm a special education teacher and have a son with high functioning/ atypical autism. To further complicate his diagnosis, he was born early, has cerebral palsy and a host of other medical issues.

Anyway... I will come back because I do have quite a story to tell for this question.

tinamarie said...

My son is now 12 yr old. We always knew there was 'something' not right. He rarely ever cried. He would tighten up if he was held. The only way we could really feed him his bottle is he was in his infant seat and NOT held. He never babbled or anything. No eye contact. He never responded to his name and he did not act like he knew we were ever around or not. His DR kept telling us "boys develop slower than girls -blah blah blah"
He started Birth To Three at 18 mths as he never uttered a word. Infact his first words came at age 4.
He started Early Childhood schooling at age 3 and a wonderful teacher suspected he had Autism. I had no clue to what it at the time. She helped us get into a specialist and she wrote a long letter to the DR about Tony's skills. She even came with me to the appointment. Tony was Diagnosed with severe Autism just before his 4th Bday.
Today is very verbal but he still has alot of issues. He is now labeled high Functioning Autistic.

Thank you so much for starting this thread.

Anonymous said...

Terry says: I am an Occupational Therapist and I work in the School system and have many children on my caseload with varing levels of Autism as well as other Developmental Delays... Autism can be a comfusing worls...and I am no expert...I find this blog refreshing...and will participate as often as I can...can't wait for your book to come out.

Anonymous said...

I am happy to see this blog! I work in a group home with adults who have developmental disabilites and behavioral challenges. Several of the people i work with have varying levels of Austim. I also have a dear friend who's son just got diagnoised with moderate autism and he is 2 1/2. He's currently functioning at 8 months. I look forward to reading your stories and commenting when i can.

Susan Raihala said...

Thank you all so much for responding with your experiences, comments and for the words of encouragement. You have no idea how motivating and helpful your participation is! I really appreciate any feedback and suggestions anyone has for what would be helpful in this site...links, book reviews, etc. Questioning Autism is in its infancy right now, and with input from other parents, friends, and professionals, I hope to nurture it into a useful place.

Thanks for getting this endeavor off to a great start!

carole (TruCarMa) said...

Hi, Susan. I came here from Joan B's blog, and though I don't have a child with autism, I do have one with special needs (my 4.5 year old son, Carter, has cerebral palsy), and so I'm interested in the world of atypically development in general. I truly believe that the more awareness that is out there for our children, the more accepting and understanding a world we create for them. Bravo to you for starting this conversation, and good luck with your book. I'll be around, even though I may not comment often if I don't have anything directly on point to share. Blessings to you on your journey.

Anonymous said...

Hi Susan,

This is a great idea. And what's interesting about your idea for the book (about being warm, funny, positive, etc. to give others hope) is that I've planned on doing the same thing for the past year or two and have all of about 5 pages written thus far. So it's good that at least someone else is doing it!

Now to answer the question, I first suspected something wasn't right at around 15 months. Paul wasn't babbling anymore or saying anything, really. (he'd only said about 2 or 3 words at one year). I mentioned it to the pediatrician and he said it was "second child syndrome" (as big brother talked a ton!). So I left that 15 month dr. appt. feeling unsettled still but waited a bit longer. Family told me not too be worried due to lots of "late talkers" in the family, but it didn't comfort me. At around 16 months I continued to be concerned and even began to question if it was autism when I read an article about it in the local newspaper. Soon after I read that I called the local developmental evaluation agency and after the phone screening they did, I knew Paul was in trouble. (The questions asked if he did anything pretend, or if he could go get something for me if I needed it and I said no). Anyway, I continued to hope it was a speech problem, but when he was evaluated, they said he was "at risk for autism spectrum disorder"; and the journey began. He actually continued to get worse during this time (or maybe we now knew what to look for), with less or almost no eye contact, more repetitive behaviors (flipping pages of books, spinning wheels on cars, etc.). He was ultimately diagnosed at 22 months with mild-moderate autism. Today he is 8 and is a totally different kid, doing so much more than we were led to believe he could ever do! So there IS so much more hope than those books we read early on ever gave us - and I'm happy to share that hope with others!! --Nancy

Susan Raihala said...


Thanks for sharing the story of your beginning of the journey. We certainly need to shift the dialogue from hopeless to hopeful, and from argumentative to supportive.

I'm so glad to hear that Paul is doing so well and can't wait to hear how well in answers to future questions!

Anonymous said...

Susan, I followed you over here from SCS. ;) Our oldest son (PDD-NOS/AS) was diagnosed Feb. 2008; just over a year ago. Looking back I can see where the red flags were...needing a cue to hang up his coat after arriving at preschool...not responding to his name while to play by himself for long periods of time...language delay...sesory issues as an infant. These are the things I can think of off the top of my head right now.

Best wishes in writing your book!!! :)
Kimberly (aka Artlvr)

Anonymous said...

I suspected a speech delay at around 10 months, when he was babbling, but no consonants. He also had multiple ear infections, from the age of 12 weeks on resulting in many ruptured ear drums. He had a very high tolerance for pain, I didn't know about some of the infections, until I saw the goop coming out of his ear. I questioned his speech, but got the standard response from most that he was just a boy, they develop later, etc. I refused to believe it. I noticed at Kindermusic that he wasn't really "into" the activities. He didn't like to be held down, but rather crawling around the room on his own. In daycare, he wouldn't play with the other kids, but rather beside them. I noticed at the park that he wanted me to play with him, even though there were other kids all over the place. I noticed that he didn't talk to other children. At almost 4, when the school ST suggested that PK had more issues than just speech, that was when I KNEW we needed to get an expert involved.

Lisa said...

Hi Susan,
I'm from SCS (aka tennisrules)and I just now considering (in the last 2 weeks) having my 9 year old tested for Asberger's. I picked up a book at my library just "for fun" and found the book describing my son. I am just at the beginning of the process and live in a relatively small town, so I'm not sure how to go about it. He's very well-behaved in school settings, but has meltdowns regularly at home related to routine, sensory issues and troubling social issues that come up at school. I would love to read your book, I really enjoy reading your blog - we need a light-hearted, but informational book out there...Lisa

JoLynn said...

When my son was in day care, at about 15 months old, his teacher at the time took the leap and said to me, "JoLynn, I don't think he's hearing me. He's just not responding the way he used to." So, for a bit, we went with the premise that he still had an ear infection. He did, indeed, have fluid in his ears, and everyone and their brothers told me that, once I have tubes put in, he will start speaking. Max had said a few words before then, like "up," but he lost them and all gesturing. Instead, he banshee screamed until we guessed what he needed/wanted. His ears finally cleared up naturally, but, with his speech delay, we got him early intervention services. It was then that I started to wonder about autism, as he had some very pronounced social delays as well (such as preferring to play alone, playing very repetitive toys, lining things up rather than using them for the purpose for which they were intended, etc.). In my state at the time, children under 3 were provided a visit to a developmental pediatrician for free, a fact that our OT person at the time made us aware of. By the time we saw him, I had cried myself through the tapes on the Autism Speaks website, read Jenny McCarthy's book, and was convinced that, not only was Max on the spectrum, but also we had missed the Asperger's symptoms in his older brother. Both were diagnosed by January 2009. Interestingly enough, I am a teacher, and I have taught several students on the spectrum. Seeing it in my own children was not as easy for me. THANK GOODNESS for the people who took the risk of opening their mouths and making me more aware of what they were seeing (teachers and friends alike).