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Early Autism Diagnosis questions

post #1 of 13
Thread Starter 

After my youngest DD's 12 month vaccines her speech/vocabulary has regressed and her social skills have regressed and now at 16 months old the MDs are talking about her possibly being on the autism spectum and sent me home with paperwork about legal obligations to report to the federal governement on developmental delays.  I am not convinced she is really on the spectrum and would like to give her a little more time to develop and learn and such before jumping to autism.  However, I am relatively new to all of this, so I have a few questions:


-do you think it is possible to diagnose or suspect autism in a one year old?

-do MD's have to report to the feds on developmental delays?



post #2 of 13

My DS1 was first red-flagged for autism at 18 months, and all of his evaluations have had remarkably consistent results since that first one.  So yes, it is possible to identify autism in a 1 year old.  That doesn't mean it's accurate in all cases.  My DS2 didn't start talking until 31 months old, and he is a late bloomer with social skills, but he IS blooming.


I have never heard of reporting to the federal gov't about autism.  I don't know what that's about.  Do you mean reporting the vaccine reaction to NVAERS (National Vaccine Adverse Event Reporting System)?

post #3 of 13

I have also never heard about reporting, I'd ask for clarification on that.


We received our ASD diagnosis shortly after DS' 2nd bday.  We started the process when he was 22 mos, and I really wish I had started it even earlier, but I was in denial.  And in my defense he is quite high functioning. 


I would start the process.  I know here it took 4 mos to get all the testing done, in other areas it can take 6 mos just to get an appointment to be seen.  Contact EI and get the ball rolling.  A diagnosis at this stage is not a life-long stone around the neck.  But it can get you some much needed help for her.  The last 4 mos of therapy has made a HUGE difference in my DS' communication and personal interaction skills.  Sure, he may have made some of those leaps on his own, but not as quickly, and not without some major effort on my part. 


Kids get reassessed every year or two.  It may be that in a few years she's on-track again.  Or it may not.  But Early Intervention is huge in terms of helping with the skills that she will need her entire life, regardless of what happens down the road. 

post #4 of 13

As Fay has suggested ~ If your doctors have evidence and believe that the vaccines caused the regression, then they might be asking to complete information so it can be submitted to VAERS, Vaccine Adverse Event Reporting System.  It is a database that provides incidents of reactions to vaccines for the feds, medical professionals, etc.  Just a thought - http://vaers.hhs.gov/index

post #5 of 13

I'm coming to this question as the mother of a DS who was misdiagnosed as being on the spectrum around 2 years old.  We went through EI and, although they don't really provide an official diagnosis, they basically told us that DS is on the spectrum.  It wasn't until he got closer the 3 that we could tell that wasn't the case and we went to a good developmental pediatrician who told us that DS has a language disorder.   In my opinion 16 months is waaay too early to really understand what is happening though of course that doesn't mean you should ignore signs that there might be something going on.


My point being that there are MANY things that can present similarly to autism and I would be very wary of anyone who wants to label a child before they are 3 - 4 years old.  The only reason this matters is that there are therapy approaches that are applied to children on the spectrum that are not good for kids that aren't.  I would be cautious if anyone wants to apply things like strict ABA therapy to your child at this age, before it is really possible to tell what is going on.  Instead, if you decide to go for therapy, I would look for a therapist that is play-based and child led. 


That said, I do strongly recommend that you get EI or a private therapist to do an evaluation to give you a sense of where your DD is in relation to the average.  This can give you a sense of her strengths and potential issues and can help you figure out if she would benefit from therapy.  Early intervention really can help even if she is just a late bloomer. 


I do agree that the Dr must have been talking about the VAERS reporting, I've never heard of any other requirement for reporting developmental delays and in fact I would be pretty disturbed if such a requirement existed. 

post #6 of 13
Thread Starter 

The doctor gave me a hand out that talked about required reporting of suspected developmental delays, and the hand out mentioned nothing about vaccines or vaccine reactions.


I come from a very long line of late bloomers, and while DD had gone from 3 words at 12 months to completely non-verbal for several months, since our appointment she has picked up 5 words that are pretty clear.  She is ahead of the curve in physical development (and I have heard that when a kid develops quickly in one area, they may be a little behind in other areas), and while big sister does not really talk for her, she does a lot for her.  DD has always been an extremely clingy to mama kind of kid, but she is branching out and will go to grandma, grandpa, sister, and daddy now.  She has never been in day care, but will now stay in sunday school for an hour without me and does not cry when I leave her (as opposed to being hysterical when left).  So she IS progressing, and I really think she is a late bloomer and shy.  I have ADHD (and so does my Dad) and in talking to my mother, I apparently struggled with all things language related as a toddler/kid (as in learning words, letters, reading, second language, grammer, spelling, yet I was great at math/conseptual learning) and so did my Dad.  I would love to avoid the diagnosis until I learn more, because I think there are more than one reason this is all playing out as it has and I feel like she is continuing to progress and develop.



post #7 of 13

Ultimately, this has to be your choice, nobody else can make that phone call for you. 


But I will say that for my DS, he is ahead of several curves, and behind on several others.  He could read at 22 mos, recite and recognize the entire alphabet, and count to 10.  His language skills were rated at twice his age.  His fine motor skills were rated almost a year ahead of his age.  But his gross motor skills were rated delayed.  And his actual language usage was severely delayed - while he has a huge vocabulary, he lacked(s) the ability to actually converse, answer questions, or have any sort of reciprocal exchange.  He's echolallic, which means he will repeat in great detail anything he has heard, from a random comment I make to reciting entire scenes from television shows.  But until recently (after months of therapy) he couldn't tell me if he was crying because he wanted something or if it was because he had hurt himself. 


I had ADD as a kid (would have been ADHD if that existed then), but did great with science/math and not so great with language, although I would read everything in sight from an early age.  Ultimately that has little to no bearing on my DS though.  Sure, it's something to note in his chart, that there is a family history of *something*, but there's no predicting anything related to delays and family history, so don't get hung up on that.


That being said, you're jumping directly to ASD, and I know here EI doesn't.  The very first thing that we went through with EI was a general assessment.  This was a meeting with a psych and a developmental ped, and they sat down and assessed him on all sorts of things, language usage, motor skills, behaviors, social skills, etc.  THEY were the ones who first recommended the autism assessment (I hadn't even been thinking ASD), along with more detailed speech and occupational therapy assessments.  If they hadn't had good reason for recommending further evaluations, the whole thing would have ended right then.  Then we had 3 more assessments (over a few months), for speech, OT and eventually ASD.  Each with a specialist in the field, each looking for their own little quirks.  He had areas of delay for both speech and OT, but ultimately the ASD Dx trumped them both.  But I was told by the assessing doctor that because of his advanced ability in several areas, he may very well no longer be considered ASD by the time he enters school - once we can work through the speech/language problems.  And that would be wonderful, if the work we do now can make that kind of difference.


Ultimately, all the studies show that the earlier you start any needed therapies for delays, the more effective they are.  So putting them off indefinitely just because you're afraid of the label seems a bit self-defeating to me.  And you also have to keep in mind that none of this is instantaneous.  It took 3 mos for us to get an ASD dx from the time I made the initial phone call.  Then it took another 2 mos before we could start therapy.  Which means that all told we only get 8 mos of intensive hands-on therapy before he ages out of the system and gets turned over to the school district.  Even though I started the whole process before he turned 2. 


I'm not sure what the pp's experience of ABA has been, but for us ABA has been entirely play-based.  We also meet with his therapists and his team lead on a weekly basis to discuss any concerns that may have cropped up, anything *I* want worked on, what the therapists may think needs work, the direction we need to be heading, reward systems, any changes that need to be made to our approach, etc.  I have the right to fire the individual therapists or the team at any point if I'm not feeling like it's helping matters.  But for instance, right now we're working on potty training, and that's trumping everything else, because that's a skill that he really does need to have.  But we're also expecting another baby any day now, and when he/she arrives, THAT is going to take precedence (they've been working on things like "gentle" up to now), as they start teaching him how to interact with the baby.  These are *my* choices of what he needs to work on, because they're the areas that impact me/the family the most. 


So really, I'm not sure what you're afraid of, other than the label, which can admittedly be scary.  But if you ignore the warning signs and in another year have to make the phone call anyway, are you going to kick yourself over the wasted time? 

post #8 of 13

You are right where I was about a year ago, trying to decide how far to venture into the world of evaluations and therapies.  I too have my own learning issues (I'm dyslexic and have problems learning languages) and so its not shocking that DS also has some stuff going on.  I caught up just fine with no intervention but I had a terrible start to elementary school. 


I concluded that I would rather look back and laugh at myself for slightly over reacting, than to look back and kick myself for not helping DS enough.  Not sure if that helps you - but it is why I decided to just go for it and get all the help that was offered (which turned out to be quite a lot, some of it really helpful and some of it total crap).  I don't regret it.

post #9 of 13


Originally Posted by BarefootMama99 View Post


-do you think it is possible to diagnose or suspect autism in a one year old?


Yes in some cases, but I don't think it's always necessary to diagnose that early. IME, you can still get services through Early Intervention without getting a diagnosis, and they don't push parents to get one or do anything they don't want to do.


It was my choice to have my son assessed for ASD and to get a formal diagnosis. He would have continued to receive speech and occupational therapy without one. 


Originally Posted by BarefootMama99 View Post

-do MD's have to report to the feds on developmental delays?


Not that I'm aware of. I think physicians are technically required to refer children to Early Intervention in their area per the IDEA. They are only required to refer to EI so families are aware of the services that are available to them. It's not to force anyone into anything or to keep track of anyone.

post #10 of 13
Thread Starter 

 Thanks for all the imput!


Cristeen - At this point we are only at the very beginning and have only seen our primary family doctor (who is the one who had me fill out a autism screening paper and is the one who brought this all up).  We are scheduled to recheck at 18 months and make a plan from there.  I am not afraid of persuing therapy or getting DD help, but I am not real thrilled with premature labels/dx because they really can effect you as you progress through the education system (and I know this from my own experience as well as from the perspective of an educator).  But I am mostly just trying to get information as this is all new territory for me as a mother and I want to go into out next appointment with some information and awareness of the process.

post #11 of 13

Hi there, just go along with the process, if your child doesnt have autism great but if the child does, start intervention early-I know people who were in denial and did nothing till things got so obvious they had to act and the child missed 2 yrs of therapy and interventions-the best success comes with the earliest intervention possible. You can always have the test repeated when the child is older and they may be off the spectrum-who knows . This is what I was told for my son

post #12 of 13

This can be a very difficult time - but remember (as a pp said) you can just go with 'developmental delay' and not get a specific diagnosis - with help she may catch up and exit EI services before she even turns three and that would be great! I have seen that happen to several children - speech therapy in particular can be so beneficial and help reduce frustration for both of you - if she qualifies than why not?


As for the reporting - that could be a state issue - Here in WV we have an autism registry and anyone who makes a diagnosis of an ASD IS required by law to report it - just a way for the state to track prevalance (and to see if there are 'pockets' of autism)


Maybe other states have laws pertaining to DD?


IMO you risk an awful lot by "wait and see" approach - you have nothing to lose by getting some services now - if she catches up they will be more than happy to exit her! There are many many children that get birth to three services that then DO NOT qualify for further services once they reach the age of 4 (for pre-k special needs) and they go on to enter Kind with no labels whatsoever


good luck

post #13 of 13

From what I understand doctor's and MD's do not have to report these finding legally. I am sure it is beneficial for them to report in order to alert the census bureau of the increasing rate of autism diagnoses. As far as diagnosing as young as 1 year old, I worked with kids on the spectrum ages 2.5 to 5 yrs of age and found that more often than not, the diagnosis was accurate. One year old is very young, and there are more screening tools available now then when I started working with kids on the spectrum 8 years ago. THe good thing is you can always have a more thorough evaluation done, and please know that MD"s have very little training on diagnosing early childhood disorders. Many kids experience these types of verbal regressions. You could have your child evaluated by any sort of early intervention program that works with infants and toddlers to have a more detailed explanation of what could be going on. Your doctor can make that referral. Hope this helps.

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