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Severity and developmental level- how do you know?

Posted by on Oct. 18, 2013 at 11:49 PM
  • 15 Replies

I see a lot of you posting about the severity of your child's autism and what their developmental age vs. their actual age. We have been to two different behavioral pediatricians and neither would tell me. Are your doctors giving you this information? The first develop ped wouldn't tell me because he said it was all being redone and it wouldn't be fair to someone else to say that my son was high functioning or severe. This is part if the reason I didn't want to go to him anymore. Well, that and the fact that you could tell he didn't really like kids or respect them! 

The current  developmental ped I was pretty impressed with, but when I asked her where my son was developmentally she just said he had some really good things going for him, but may never be able to live independently from us. This was based on a 45 minute visit with her, but she said after this much time with other kids she WAS able to determine if they would live independently. It kind of floored me because I have never really had any doubt that he wouldn't be independent and...she never answered my question!

My son only met with the first doctor twice and the current one once. Is this not enough time to tell? So, I'm wondering... When and how did you ladies get this information? 

by on Oct. 18, 2013 at 11:49 PM
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by Bronze Member on Oct. 18, 2013 at 11:56 PM
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The psychologist told me that my son was severely autistic.. *I* think she's on crack. If he were to get assessed again now at the age of 6, I don't he'd be given the same diagnosis. He had JUST turned 3 when he was diagnosed.
by Brittaney on Oct. 19, 2013 at 1:21 AM
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The developmental pedi said my daughter is moderate to severe based off the ADOS scores. I know her developmental age from Early Childhood Intervention's assessment. They used the Battelle inventory and it shows how many months your child is delayed and therefore how many months they actually are, depending on the category. Like my daughter is severely delayed in language...showing she's at a 9 month level but not near as delayed in fine motor coordination, which she's around an 18 month level.

by Jen on Oct. 19, 2013 at 8:59 AM
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When my child qualified for EI they told me they can qualify him on clinical judgement or based on severity of delay. They continued to say that knowing the percentage of the delay wasn't helpful - and didn't share that with me.

When he was evaluated at school. I only got a standard score. 85. So I asked for the face sheets of each test. And there, they also had the percentiles. The space where you put the age equivalent was blank. So they didn't tell me either.
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by Member on Oct. 19, 2013 at 9:35 AM
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We weren't told either but our ADOS test is scheduled out to Janurary! Everything is a stinkin waiting game!
by Nicole on Oct. 19, 2013 at 11:03 AM
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I know that infants and toddlers tells us where he is with development. My son was on age limit with language, but speech was 36 months. He will be 4 next month. So, almost a year behind. This was before his diagnosis. The psychologist that diagnosed him said that he fell in the moderate range of ASD. but she also told me that he will probably go down to mild in the next couple of yrs.
by on Oct. 19, 2013 at 11:30 AM
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When my son was diagnosed at 6, the "professionals" told us his IQ was 85   :  (    It was measured at 110 last year and will likely rise as we go along as he is working with still-improving language issues that caused him to score low to begin with.

Take scores on tests to measure intellectual development with a grain of salt. How can you make a good score if you don't understand how to take the test??!! I read an article in Science Daily recently stating basically that ASD kids are always smarter than they test.

 Sad to know now how inept these  people who are supposed to help often are. I didn't get my info from them. I got it from research.

Now at 14, he has always been in a mainstreamed classroom and makes straight A s, even in geometry. (Geometry sucks)

He has very real, concerning problems with social skills and is very socially unsophisticated. Girls make him very nervous  :  )

That's where he has  delays. He could be taught anything in a classroom, but it's going to take years of focused work to get it socially.

I would just say to you that the professionals know hardly anything.

Your child will change exponentially between now and adulthood.

by Gold Member on Oct. 19, 2013 at 12:50 PM
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My dev pedi is kind of the same way.

Here's the truth. NOBODY knows. NOBODY nobody nobody.

Did you read the story of my next door neighbor? Kid had 4 words by the time he was 4 1/2. Honestly, based on that, he would be considered severe. Severe developmental disability. Intellectual disability. Kid graduated from Boston College.

There have been so many accounts (are they statistical anomolies? I don't know) but there are many many accounts that have not been accounted for by CDC that we just don't know.

Many people 20 years ago "hid" their kid and just worked with them at home. (crazy aunt in the attic?)

A lot of those kids are functioning adults today. Quirky. Would have been considered severe. But we just don't know b/c we've only been measuring and keeping track of this stuff, really since Autism Speaks started making headlines.

Dev pedi's, i think, value their own hypotheses. They won't make a hypotheses if they are not sure.

But they won't say "I don;t know" b/c *they* don't want to feel bad, i guess. I don't know. Its like undermining their science. They know the next step to take. They can confidently help you w/ the next step. But they don't know the future. There's just not enough research out there to make a reasonable prediction.

by Gold Member on Oct. 19, 2013 at 1:41 PM

I found out by an educational specialist's evaluation.  He was found to be at the level of a 6 year old at age 3.  His child psychologist diagnosed him with mild Autism. 

by on Oct. 19, 2013 at 1:50 PM
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I have gotten Alex's scores and diagnosis from his reports. I want a complete copy of his medical file. There were a ton of things listed in his chart that I didn't know about. I ask for copy's of everything and make sure to read it myself. There have been a few times that there have been mistakes made by specialists because they use different codes for different things. Nothing big but little things, it's scary. We've been working with TCRC, the local sppecial needs center since Alex was a year old. They submitted a comprehensive long term analysis to the psychologist that diagnosed him with Autism. There are a ton of different scales and tests that they use to figure out where each child is and what their strengths and weaknesses are. They measure different areas of development and round it out based on the categories to give a comprehensive age vs actual age. Alex excels in physical development and problem solving. His social and language skills are very low. At 3 he only has pre language sounds.

I think the best piece of advice I have gotten so far through this whole journey was from a genetics doctor. She told me that Austism is a grey area. There is no right or wrong and there is no box that it can fit into. The last few years have had enormous leaps and bounds in understanding and it will only grow. She said that we are learing and understanding more about Autism the brain and the nervous system. She said that so much money is being dumped into research that there will be advancements made every few months.

by Emma on Oct. 19, 2013 at 2:02 PM
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I was told I'd probably never live on my own, or have any kind of independant life.... ^.^ and.. I do.

So, take their opinion with a grain of salt, you have NO idea where your kiddo will be in 20 years.

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