re-intro and qn: should I pursue ASD diagnosis?

wishesforfish

Hello. I last posted about a year ago about my DD who was 15m corrected at the time. She was repeating a lot of songs, sentences from cartoons etc. Fast forward to today, and she is in speech and OT for echolalia and poor social skills. She will age out of EI in March. I managed to get her in EI quickly because her twin is already receiving services. Both DD and DS will be evaluated for developmental preschool soon.

The SLT says that about 60-70% of her speech is repetition or echolalia. DD also has a lot of difficulty making choices. Eg. When asked if she wants A or B, she will say "A or B" and point to both. We often choose for her to model the behavior. She will eventually state what she wants after a lot of coaxing, depending on the object desired. She also displays some avoidant behavior - she will fall to the floor if she doesn't want to do what we ask, or she will turn her head, huff in annoyance. etc. DD uses a lot of frozen phrases eg. a request for food will always be "mommy gives some X," X being the desired food.

She does better in OT. We work on sharing, turn taking, etc and DD is quite good at that. She can comprehend and carry out multistep instructions without prompting. DD can also read several simple words eg names of animals, foods, colors, shapes.

My question is..should I pursue an ASD diagnosis if DD will most likely continue to receive the speech and OT services? Is there any point to an ASD diagnosis beyond getting services? In particular I feel that DD has the potential to excel academically and I don't want to hinder that. No offense meant to others who have an ASD diagnosis.. I do think that DD is somewhere on the spectrum, but I'm not concerned with where she is, as long as she receives the services that will help her. I'm not asking for a diagnosis over the interwobbles; I would like your opinions as SN parents. Thanks.

typeset

There's more out there than speech and OT. My son is also echolalic, immediate and delayed, and hyperlexic. He receives 28 hours a week of ABA in addition to an hour of EI speech and an hour of private speech in large part so he can push past the avoidance and share his brilliance with the rest of us. If the developmental preschool doesn't offer the services, I'd pursue the diagnosis so that insurance will cover therapy for her. 

malcivar

wishesforfish:

The SLT says that about 60-70% of her speech is repetition or echolalia. DD also has a lot of difficulty making choices. Eg. When asked if she wants A or B, she will say "A or B" and point to both. We often choose for her to model the behavior. She will eventually state what she wants after a lot of coaxing, depending on the object desired. She also displays some avoidant behavior - she will fall to the floor if she doesn't want to do what we ask, or she will turn her head, huff in annoyance. etc. DD uses a lot of frozen phrases eg. a request for food will always be "mommy gives some X," X being the desired food.

This is very much like my son who has an ASD dx.  I'm not saying that's your daughter's case but the above could very well be used to describe Chris's speech and some behaviors.

You say you're afraid an ASD dx would hinder her academically.  I think you're making an assumption that the dx would somehow prevent her from receiving the same education as an NT child.  That doesn't have to be the case.  She may be able to attend a mainstream class with support services which will only help your end goal - academic success.  Services, that without a dx might not be available to her and if she truly is on the spectrum, you'd be doing her and her academic future a disservice.  

Good luck with everything. 

meghans30

malcivar:

wishesforfish:

The SLT says that about 60-70% of her speech is repetition or echolalia. DD also has a lot of difficulty making choices. Eg. When asked if she wants A or B, she will say "A or B" and point to both. We often choose for her to model the behavior. She will eventually state what she wants after a lot of coaxing, depending on the object desired. She also displays some avoidant behavior - she will fall to the floor if she doesn't want to do what we ask, or she will turn her head, huff in annoyance. etc. DD uses a lot of frozen phrases eg. a request for food will always be "mommy gives some X," X being the desired food.

This is very much like my son who has an ASD dx.  I'm not saying that's your daughter's case but the above could very well be used to describe Chris's speech and some behaviors.

You say you're afraid an ASD dx would hinder her academically.  I think you're making an assumption that the dx would somehow prevent her from receiving the same education as an NT child.  That doesn't have to be the case.  She may be able to attend a mainstream class with support services which will only help your end goal - academic success.  Services, that without a dx might not be available to her and if she truly is on the spectrum, you'd be doing her and her academic future a disservice.  

Good luck with everything. 

 

Like others have stated it is important to get the dx early so, if she is on the spectrum, she will receive the correct services. My son received the dx last year at age 6. Before this, he was only dx with a speech disorder and was deemed ineligible for services upon entering 1st grade because his speech was caught up. He was/is behind in social skills. I have always felt he fell somewhere on the spectrum, but without the dx we could not get those services for him. He is now in an inclusion classroom with the support of special education staff and an ASD specialist who checks in on him frequently. He receives direct social skill support 2x per week and goes to outside therapy. We are seeing some progress! Without the correct dx, we could not get the services he needed. 

wishesforfish

Thank you..that's probably what I needed to hear. Unfortunately our insurance does not cover ABA or any other kind of child developmental therapy unless therapy is required for a severe lifelong disability ie lost a limb in an accident.

I apologize for thinking that DD's academic needs would somehow be not catered to. During speech therapy our SLT works on some extremely basic concepts like naming colors, etc that DD clearly already knows. I can see DD being bored to death if that's what they did in preschool. Perhaps there's something I'm not seeing that she's trying to accomplish.

 I have some questions about ASD diagnoses. Which professional should provide a diagnosis? We have seen developmental pediatricians at Riley (the major kids hospital in our area) who told us to go to the local autism society or some other center. Have to look up the name of the contact I was given. Would the developmental preschool have to accommodate DD's needs if she has a ASD diagnosis?

kcisthebombdotcom

Welcome! I also have a little girl we're getting evaluated for ASD next month. To answer your questions--yes you should pursue a diagnosis so you can get her the most help. While it may not help you with insurance, it will help you with your transition out of EI.

We're getting my DD evaluated at our local children hospital's neurodevelopmental center. They're staffed with a neurologist, developmental pediatrician, SLP, OT, etc so it's more of an all in one deal. I've heard a variety of sources being used to diagnose--autism centers, psychologists, developmental pedis, etc. I would check with your pedi for their recommendation. GL!

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wishesforfish

I can't do quotes.. haven't figured it out for this forum..

 

As someone without training in child development, I see that DD has a LOT of speech but so much of it is echolalia (eg she likes the way it sounds or it's a way for her to pretend she's part of the conversation without using novel words). Her diction is perfect so it sounds like we have a very cute parrot. She can also do accents. We are trying to do substitutions in her frozen phrases eg instead of Mommy gets some puffs, we substitute Daddy and other foods.

 As for speech homework, the SLT suggested working on choices this week because DD has a huge problem with indecision or inability to articulate her choice. She won't even choose between a cookie and a screwdriver. This impacts a lot of daily life obviously. I'll ask the SLT about her approach next week.

 Riley:

I really don't understand why we got fobbed off to a local advo group (which I contacted and was told by them to go back to Riley). It takes MONTHS to get those appointments at Riley. I may have to call them and see if there was someone specific I was supposed to contact. Our pediatriacian doesn't believe that DD is on the spectrum because she aces the MCAT. If I recall correctly the MCAT doesn't mention echolalia..but now that it's getting so bad that the casual observer will notice something off, maybe she will give us a referral. 

 The twins will go to special needs preschool (if they qualify) in April. I'm supposed to receive word on their evaluation dates soon. DS has a feeding tube, and a more "typical" global delay. Our school district only has one preschool program for developmentally delayed kiddos but I'm told it's a good one. They have a "developmental delayed" class, a class that works with speech kids and another class that's just an hour or two of speech a week I believe. So depending on what their evaluations show, the twins will be funneled into one of those classes.

  edit: DH said Riley telling us to go back to a local society was probably an insurance issue. I wish someone had just given it to me straight - get a referral from primary ped.