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How Did You Know? Early Signs of Autism

by Trish on January 7, 2010 · 8 comments

in Autism, Awareness

When I am talking with other moms and the subject of my son’s autism diagnosis comes up, one of the most common questions I am asked is, “How did you know?”  Well, the answer is, “I didn’t.” I sensed that there was something not quite right but just assumed that it was because I was struggling so much as a first-time mom.

Although I had heard over and over that each child is an individual and that the lists in the baby books were just rough guidelines of what to expect, I still constantly referred to the developmental milestones to see which skills I could check off.  It was very confusing because some skills he had mastered were well ahead of his age, while others were lagging quite a bit behind.  I didn’t know whether to say yes to things that he had done once or twice, even though I had never seen or heard them again.  I have since learned that inconsistent development is one of the hallmarks of autism.

We were quite fortunate that my son’s pediatrician advised us at his two-year checkup to contact our local Early Intervention program. My son was shown to have significant delays and began receiving both speech and occupational therapy and was also referred to a developmental pediatrician for an autism evaluation. Over the next few months, I learned a lot about the red flags for autism.

Within a diagnostic category such as autism, there can be a lot of variations in the characteristics presented by each child. Many of the items on this list from the Autism Society of America applied to my son to some degree:

  • Insistence on sameness; resistance to change
  • Difficulty expressing needs, using gestures or pointing
  • Preference to being alone; difficulty mixing with others
  • Little or no eye contact
  • Unresponsive to normal teaching methods
  • Sustained odd play, such as spinning objects
  • Apparent over-sensitivity or under-sensitivity to pain
  • No real fears of danger
  • Noticeable physical over-activity or under-activity
  • Uneven gross/fine motor skills
  • Non-responsive to verbal cues; acts as if deaf although hearing tests in normal range

My best advice to any parent who is concerned about their child’s development is to contact their Early Intervention program and arrange for an evaluation. Whatever the outcome, it is good to know where your child’s development is and what you can do to help them progress. Do not let a doctor, friend or a well-meaning family member telling you that “she will grow out of it” or “boys develop more slowly than girls” stop you from listening to your gut. Earlier is always better when it comes to addressing developmental delays or disorders. And, through it all, remember that your child is still your child – an evaluation or diagnosis does not change who he or she is.

Note: This article appeared originally on Root & Sprout, a parenting ezine which is no longer available online.

{ 8 comments }

Barbara January 7, 2010 at 12:40 pm

I didn't know Root&Sprout died.

Thank you for this straightforward article. Obviously you do not relate your son's diagnosis to a particular event. And for encouraging parents with concerns to not be put off. Can't tell you how many children I have treated who were expected to “grow out of it”. Your best advice is very good.

2Shaye January 7, 2010 at 12:42 pm

Very well written, Trish. Nice and concise, but thorough enough to help those of us who aren't sure if we should be concerned. I'll give our history…which isn't quite as concise. LOL

When my son was 2, we had several people concerned that he may be autistic. Out of your 11 points, we could probably check all 11 of them at the time. Having worked with ASD children in the public schools, I knew we needed to get whatever testing done right away so that we could help him. We contacted Early Intervention and they came out to our house several times for all sorts of tests and procedures. Initially, they were leaning toward saying “yes” to ASD. We filled out gobs of paper work, met with several different special education employees, and a few weeks later he had finished his tests. We met on the school campus and though he qualified for assistance in speech, he didn't qualify in any other area. Nebraska's laws dictate that you have to qualify in TWO areas to get assistance. But they also said that based on his tests, they felt strongly that he was not on the autistic spectrum as they had originally thought he might be. We were referred to a pediatrician (we didn't have one within a two hour drive) in a hospital and made the journey for more testing. We filled out paperwork and before the pediatrician even came in, she said she sat down and read our answers and was confident that she would be walking into a room that contained a child with autism. But she told us, quite openly, that after spending just 10 minutes with our son that she feel confident that he was not on the spectrum. But…after Early Intervention and our check-up with her, she'd be happy to send us for a third opinion to a pediatric psychologist. They started us on sign language (which was my foreign language in college, thankfully) and we agreed to a arrange a 2 hour visit for the next month with the psychologist. However, after receiving our paperwork and seeing how incredibly long and tedious the testing would be, I contacted a dear friend from another state who was a speech pathologist (working daily with many ASD children) just to make sure we weren't overdoing it with all of these tests so close together. Her advice, after he'd already gone through two testing groups, was to wait until he's at least 3 for more tests if he'd made no progress. She gave a whole list of reasons, but what it boiled down to was that many children are inappropriately diagnosed at 2. To be clinically diagnosed, there has to be proof of long-standing pattern that rules out naturally delayed development. She said the growing belief (probably because of multiple false diagnoses) in the special education field was that a pattern cannot be properly determined before the child turns 3 and that getting the early testing would work to our benefit as we now have great documentation to use for testing again and comparing results in another year. Our whole family tried going casein and gluten-free for a while, too. To be honest, that diet seemed to help ALL of us feel better (except that I had a lot of anxiety over trying to reproduce breads).

WOW, that's a lot of writing. Anyway, since being able to check almost all 11 of those points when he was 2 1/2, he's now down to about 3 points by the age 4 1/2, which is quite normal. He was extremely slow to develop speech and he still struggles with it at times. That frustrating in communication affected all sorts of other areas of development (i.e. not wanting to be around others, pointing or grunting at objects, etc.). He was also a bit sick…had allergy-type symptoms all the time, frequent ear infections, fevers, etc. At one point, his doctor was even worried that he might have leukemia. This could have also been a contributing factor since he wasn't feeling well. Poor thing.

Since all of the testing (both clinical and blood tests), the worries over Leukemia, the struggles with speech, the diet trials, and everything else…he seems to be right on track with only a little struggles with speech. Surprisingly, after all the testing was done, he potty trained himself in a couple days at the age of 2 1/2 (right when his little brother was born — that birth made a HUGE difference in his development).

Anyway, just wanted to swing by and see what you've been up to. It's been a few months since I've been here. I took a LOOONG sabbatical in September and am slowly getting back into the groove. :GRIN:

Karen January 7, 2010 at 6:09 pm

Trish,
I really didn't “know”, persay but I could tell that my son was delayed with speech and commumication issues. Also to be honest that before he was born I could tell something just wasn't right in the womb. My son simply couldn't be still, used to roll constantly inside my womb, actually kept me up and I could never sleep. When he was born he didn't seem it all the same behavior wise. Didn't like to be held. His pediatrician never did give us a Rx and it was presumed he was just very delayed in some areas. Not until around 5 years later when he turned 7 that he recieved a Rx from his school. Now just turning 8 today, we can now say he has an official “Autism” Rx. This is a short version of my story.

territorymom January 7, 2010 at 6:21 pm

Early intervention is so important. We started when my son was 5 months ago. I think that autism awareness, developmental delays, birth injuries, etc. should be part of prenatal care. Boy, if I had only known.

Trish@AnotherPieceofthePuzzle January 7, 2010 at 11:57 pm

I totally agree! My son was born with a physical issue and it was so overwhelming. I had no idea what questions to ask or what to do until I was able to get home and start researching everything.

And then to be hit with autism after struggling for almost three years with his development was like starting all over for me!

Trish@AnotherPieceofthePuzzle January 8, 2010 at 12:00 am

It's amazing how many moms I talk to who felt something in their gut but couldn't get a straight answer from their doctor or were told they were overreacting.

Trish@AnotherPieceofthePuzzle January 8, 2010 at 12:08 am

Glad you stopped by! And I am so glad to hear how much progress your son has been making.

That's interesting (and sad) that he has struggled with illness. I think about how my learning and communication abilities go down when I am sick, and it makes me think how hard it would be for a young child to grow and learn when they don't feel well. I know helping my son's physical issues has made a big difference for him (although he definitely still has neurological differences in social perception and communication).

Looking forward to seeing more posts from you!

Trish@AnotherPieceofthePuzzle January 8, 2010 at 12:12 am

Yeah, it really came down to financial viability. Lis (the creator of the site) is now focusing on her own writing and seems to be doing well.

You're correct in that I didn't see any one event with my son. One thing that I haven't talked about on this blog is that he was born with a physical issue that is often attributed to some of the same environmental factors people question with regard to autism, and it occurs during pregnancy. I'm not saying they are connected, but just that I don't rule out environmental factors in affecting him before birth or impacting the degree of autism he presented with at the time of diagnosis.

Anyway, that's quite a ramble, but thank you for your kind words.

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