diagnosing autism — The Bump
Special Needs

diagnosing autism

Thanks to Glendi for posting the link about the M-CHAT.  It was really helpful, and the info is also available at www.mchatscreen.com

My daughter is a little younger than the 16-30 month age range for the M-CHAT, but as of right now she would fail the test.  I'm trying to get an idea of what's in store for us after I get a referral to a developmental pedi.

My little girl does not pretend.  She doesn't point with her index finger to ask for something or to indicate interest in something.  She doesn't walk yet.  She doesn't seem to understand what we are saying most of the time.

1.  Does anyone have info on what percentage of toddlers who fail the M-CHAT actually get diagnosed with ASD?

2.  If we need to go outside our health insurance plan to see a developmental pedi, will the evaluation cost a small fortune?

3.   How long does an evaluation take?  What happens at an evaluation?

4.  I noticed that there are no questions on the M-CHAT about expressive language.  How does my daughter's severe expressive language delay fit into the picture?  How does the specialist determine whether the speech delay is related to autism or not?

5.  My daughter exhibits tactile defensiveness.  Does this factor weigh in favor of an autism diagnosis?

 6.  Can anyone recommend a book or website for parents wondering if their speech-delayed kid has autism?

Thanks for your input.  My daughter has been showing progress lately, but I'm still losing sleep wondering if an autism diagnosis is in our future.

Re: diagnosing autism

  • my youngest is your daughter's age exactly.  16 months is really young for a diagnosis.  I'm sorry I don't know your history.  Is she in early intervention?  Are her therapists suggesting further testing?  Does she have any words at this point?
  • Yes, DD is in EI.  She gets 1 hour a week of global therapy for her speech and feeding issues through an individual infant program.  Her therapists are not suggesting further testing at this point.  She doesn't have any words, and she didn't start babbling until 13 months.
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  • The easiest question to answer.... insurance...Have you already gone through Early Intervention? If you start there for your daughter's evaluation, it will be free/low cost in most circumstances. This program is a wonderful resource, even though not everyone has a wonderful experience, everything has it's flaws. This is where DS got his diagnosis.

    It is also a recommendation I hear often to go ahead and get that Dev. Pedi appointment on the books. Auntie says that a lot of the good ones don't have to take insurance, so yes that will cost you a good chunk. In our experience, it was a copay and I'll tell you the truth, for a 2 year old.. they just couldn't offer a whole lot. Our EI team and Eval was more useful. When my son was closer to 3, it was more helpful regarding our choices of outside therapy when EI was done. (EI ends at the age of 3 and the preschool services take over at the state level. Everything else is private).

    Being in your shoes once.... at least to some degree.... I think MOST of your questions are really best answered by the evaluation itself. Deep down, I know you just want to know... but honestly... your daughter might be closer to two before they can offer you a very distinct view of a diagnosis. This is not the case 100% of the time, but for the most part, diagnosis is very fuzzy until they are old enough to actually have 'missed' some of the milestones. Does that make sense?

    I pray you get some answers and some releif. I know this is tearing you up.. I've been there.

    Some resources I found useful, or have been well recommended:

     http://www.babyzone.com/baby_toddler_preschooler_health/autism/article/well-known-autism-therapies-guide  (only good because maybe it will give you this breif overview without overwhelming you!)

     http://www.earlyinterventionsupport.com/

     http://www.amazon.com/Making-Sense-Autistic-Spectrum-Disorders/dp/0553806815/ref=wl_it_dp_v?ie=UTF8&coliid=I7Q1P3Y2T7RP0&colid=253NWX2F63GZF 

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  • I see your response above. I'd call your case manager and ask for an autism screening. Your current therapists may not be mentioning it b/c it's not their area of expertise. It's possible.
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  • 1) Not sure, but it's a pretty good safety net in identifying children early on who might be prone to ASD later.

    2) We were able to get our eval and diagnosis in network, so I'm not sure what an out-of-insurance evaluation would cost... I know families who've had private evaluations done, and it's been around 2-3K, I think.

    3) Our evaluation was pretty simple. I had a ton of "evidence" based on what I'd already read about ASD, so we provided that. The dev'tal pediatrician assessed Sylvie's communication and social skills, her cognitive skills, and whether she exhibited lots of repetitive or stimming behaviors over two visits that lasted about 90 minutes.

    4) Expressive language delays def. play into a diagnosis. Obviously, though, it's considered along with many other factors, so an expressive language delay alone would hardly been an indication of autism.

    5) Again, tactile defensiveness play into a diagnosis, but only in conjuction with other factors... not on its own.

    6) I know our EI therapists were very hesitant to introduce the topic of autism... only after I'd begun inquiring about the possibility of some sort of developmental disorder did they discuss the possibility. At the time, my service coordinator recommended the book "Does my child have autism" by Wendy Stone. It was a really good stepping off point for me, and verified/validated what I'd been seeing in Sylvie.

    Hope that helps a bit. :)

     

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  • I'd say at 18 months is probably the earliest you could get any type of diagnosis and at that, it may not be definitive. 2 yrs old is typically closer to the age they start making things more official. My ds did show signs as young as yours, by not responding to his name, playing alone and acting as if he didn't hear us. We did have a hearing test done, which came back normal. But, that is all we did. It was closer to 2 1/2 that things started kicking in as far as evals and such. But, we also waited longer than we should have, because of our naitivity and our doctor at the time, who said ds was just lazy. 

    Go ahead and get on a list for a dev ped, typically they have some wait times, and your dd should be closer to an age to get some better answers by the time she sees them. We have two dev peds in our area, one took our insurance and had a 6 month wait. The other did not take insurance and had a two week wait. This is who we went with, because we needed a diagnosis from an MD to get therapy started and covered. We paid out of network for them, so the insurance did pay some, but not all. Look at your out of network benefits and talk to the dev peds and see what they charge and do the math.  

    EI may be the best route for you in the meantime. My ds has been in ST, whether through EI or private since he was 2 1/2, and he has made great strides. So try to focus on treatments for symptoms, until you can get in to see a professional.

  • A side point on what you  mentioned in your reply....I would talk to your service coordinator also about the types of therapy you're getting.  I'm a little confused...1 hour a week, but multiple therapists?  I don't know if global therapy is the same as what we call developmental therapy here.  To me, it is a multi-disciplinary person who does a little of everything.  It can be great, but it's also often what we put kids in when we don't have discipline-specific therapists available.  Somebody with a specific background in the area of need is preferable.  If you have a diagnosed speech delay and a non-walker, to me that should equal at least an hour of PT and an hour of ST per week, plus whatever other services she needs.
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  • Just a comment.

     If I were you - I would work hard to get that diagnosis (whether or not its precise) and use it to your advantage - i.e., get the therapy, etc. that your daughter needs to address whatever devt delays she is experiencing whether or not they are caused by autism.

    I really think it takes awhile to know whether or not a child is classic ASD - but getting the services as early as possible in the case of any child will only help.

     Good luck - stay strong :)

     

  • We went outside of our network for dev. pedi at UCLA and it was around $600/visit. Not sure how much it would have been with no insurance at all.

    I would also encourage you to request a formal eval through your EI. You can call your case manager and get it started that way.

    It's true that your daughter is pretty young still and I'm not going to lie...even at 2.5 yo my son was NOT dx'ed with ASD at the develop. pedi's. You could say it was a waste of $600 for us at that time, but at least we were able to enroll him in an excellent 4-month program at UCLA, only because we went to see that develop. pedi (she was the head of the program).

    I also agree with PP that one hour/week of therapy that you're currently getting doesn't seem sufficient based on what you're describing. If you have a clearer dx, you may get a lot more therapy as well, that's why a comprehensive eval could benefit you guys. Even then, you may have to substitute with private ST,OT...etc (whatever is recommended by develop. pedi/EI psych eval). I know our dev. pedi recommended 4 hours of speech per week at 2.5 yo, but EI only gave us 2 hours/wk. The other 2 were up to us to pay for privately.

    I hope it helps! Your concerns seem very valid to me, so I think your first step should definitely be a formal evaluation, so you can get some answers and have a place to start.

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