New with a question

Cmarie08 · January 2014

First off, hi! I have two children, an 18 month girl and an 1 month old little boy that I stay at home with. I've lurked for a while on various boards but never really got up the nerve to post anything on the bump, until now

. If this gets lengthy, I apologize.

I've come here because my 18 month old recently was evaluated by early intervention through our state and found to have a communication delay and a social delay. It was like pulling teeth to get her evaluated, even though she was obviously delayed in communication (she only has 3 words). My question is related to autism, though. I was under the impression that early intervention would be screening her for autism during the initial evaluation but apparently I was wrong. I brought up that we (dh and I) had concerns of her showing signs of mild autism to the case worker but she said not only do they not screen for it, but also, she's too young to be accurately screened. Am I missing something here? I thought 18 months was when they began screening for autism.

I know her pediatrician will not do a screening until 2 years and that's the only other place I know to get her tested. I would like to be proactive if she does need assistance but I feel like I'm being dismissed as an overly concerned mother. So, I guess my real question is, is there anywhere else we can go to get her screened for autism, other than her pediatrician? Or is it really best to wait until 2 anyways, since I feel it may just be a mild case? I feel kind of lost on where to turn with this.

d.f · January 2014

I blew off any concerns until 3 so I don't know much about earlier screening. For private evals we went to a Developmental Pediatrician at our local Children's Hospital (our general pedi gave a referral when requested). The Dev Pedi referred us for a full developmental eval from a psych, and OT and Speech Evals. I've heard of people going straight to an experienced psychologist for evals.

Wait lists can be lengthy, particularly for Developmental Pediatricians, so if you got in one now it might not be until closer to 2 (or after) that you reach the top.

typeset · January 2014

Trust your gut.

EI cannot diagnose autism. Start by talking through your concerns with your pediatrician. There is no reason to wait until two if you see flags. The waitlists to see the specialists can be months long. Better to get on them now. The people qualified to make the diagnosis are a developmental pediatrician, a child psychologist, or a pediatric neurologist.

typeset · January 2014

We went through a neurologist and got a Dx the day before he turned two. The second opinion Dx was made two weeks later by a developmental pedi/psych team at the local children's hospital. They ran a battery of tests, including the ADOS and the Vineland.

Cmarie08 · January 2014

Would we need referrals from her pedi for any of these options?

I would've never thought about going through a neurologist, that's a great suggestion too.

Thanks!

Cmarie08 · January 2014

Totally missed that whole first comment. Sorrry! i'm not all there today!

typeset · January 2014

Cmarie08 said:

Would we need referrals from her pedi for any of these options?

I e-mailed my concerns to our pedi ahead of the kid's two-year appointment and got the go ahead to contact the developmental clinics at the local children's hospitals. Your insurance may have more to say on the matter.

MirandaHobbes · January 2014

Welcome to the board. My son was 20 months when our DCP suggested to us that we get him screened by EI. He had 1-2 words, and she thought that the had a hard time playing with the other kids (e.g. he simply did not care to play with the kids, and was cranky/frustrated most of the time). Our regular pedi did the mandatory ASD screening at 18 months and there were no worries at that time- although that was probably my fault for not giving the questionaire more thought. So I went to another pedi at 20 months and he referred me to EI. Our EI does not give "medical" diagnosis but rather "Educational" diagnosis. He was technically labeled "at risk for ASD". EI looks at it from a needs drive services- so they aren't so worried about the "label" as they are getting the child prepared for school.

I chose to wait until DS was 3 years old before getting a full screening by a developmental pedi. This is a subset specialty unrelated to his regular pedi. You can also go to a neuropsych. In my area, we were planning on taking DS to a therapy clinic for evaluation (think ST, OT, PT, etc), but in the end it was easier to go to a developmental pedi, and he had a shorter wait list to get in. We waited about 4 months, but on these boards I hear of much longer waits.

The diagnosis may change over time, but I'd prefer to get as much help now as possible. Don't dwell on whether or not you DD's has a "mild" presentation. When DS was diagnosed they kept saying "mild" and I thought that meant he'd outgrow it. Not so much. He's 5 now and in mainstream kindy with a full-time aide. His speech did pick up right away after starting ST through EI, and now he's actually ahead of his peers in terms of comprehension and language use, but he struggles daily with socialization and behavior.

Good luck! Keep us posted. And good work searching out EI for your little one!

kcisthebombdotcom · January 2014

I also had concerns about my dd when she was 18 months. I got a referral to a neurodevelopmental pedi at our local children's hospital. She was evaluated at 2 and was found to have a few red flags for autism but was not diagnosed due to good social and play skills. She did receive a diagnosis closer to three when her social skills were labeled as inconsistent and she developed an obsession with letters/reading.

Junebug060609 · January 2014

My DS was flagged via MCHAT at his 18m appt. At a developmental eval at (à day shy of ) 21 mos he was labeled "at risk for autism" as well as being dx'd with global delays.

He is now 27 mos and has his 6 month follow up eval next week. Expecting à dx then.

SantoriniSteph · January 2014

We started having concerns around 18 months, our doctor referred us to their Autism department, the wait was 4 or 5 months to be seen. We got the ASD Dx at 23 months. They referred us to the Regional Center which started services immediately. Long story short, new policies went into place and we made too much money (which shocked me) to continue having Regional Center pay for it. Since we had already started services, it was really easy for us to switch to our insurance covering it. Now that DS is 3, we are in the public school system. In the past year we have done ABA therapy 15 hours a week, speech therapy 1 hour a week (both covered by insurance), plus we found a private preschool that specialized in Autistic kids 2 days a week.

See if you have a Regional Center near you, or try Easter Seals (www.easterseals.com) they might be able to help direct you.

Cmarie08 · January 2014

I'm glad y'all cleared up my misunderstanding of what EI is for. It makes sense they couldn't give her a dx but I am glad we've seen them anyways, since she clearly has these delays and needs the therapy.

We did bring up our concerns at the pedi's office but he wanted to take a wait and see approach, but he seemed dismissive, in my opinion. He didn't offer to screen her or ask many questions. I used the M-CHAT tool online and she scored a 6, and I think I had read that was considered "at-risk".

So, my next move should obviously be to talk to her pedi about the at-risk score. Hopefully that will put us on the right path for the referral we need.

Thanks for all the responses, they've helped tremendously and it really helps to hear others experiences because I have no idea what I'm doing, lol.

Cmarie08 · January 2014

She just doesn't express an interest in other children either, her age or not, it doesn't seem to matter. Some of my friends have children around her age and she just simply ignores them when we go to visit. I just thought she was shy for a while but when her language never developed like their's did, among a few other things, I started to consider maybe there was something else going on.

I kept emphasizing mild because that's how I've been explaining it to my family. I guess I just got into the habit of it. Although, I was thinking that if it were a mild case that she would outgrow it or the symptoms would be minimal later on.

Our next appointment with EI is next Weds., so I'll make sure and update afterwards! I'm curious what they will suggest. Do you have any experience on what kind of therapy they might suggest with a social delay?

This was supposed to be a RE:@Miranda

kcisthebombdotcom · January 2014

Cmarie08 said:

I'm glad y'all cleared up my misunderstanding of what EI is for. It makes sense they couldn't give her a dx but I am glad we've seen them anyways, since she clearly has these delays and needs the therapy.

We did bring up our concerns at the pedi's office but he wanted to take a wait and see approach, but he seemed dismissive, in my opinion. He didn't offer to screen her or ask many questions. I used the M-CHAT tool online and she scored a 6, and I think I had read that was considered "at-risk".

So, my next move should obviously be to talk to her pedi about the at-risk score. Hopefully that will put us on the right path for the referral we need.

Thanks for all the responses, they've helped tremendously and it really helps to hear others experiences because I have no idea what I'm doing, lol.

My pedi was very dismissive as well, especially when she gave her a book to read and she pointed to a picture, said the word and looked up at her. Heck, my kiddo initially even fooled one of the top autism diagnosticians into thinking she was just a language delayed kid that would eventually catch up with speech therapy. Remember your pedi only sees a small snapshot of your child in a twenty minute appointment. Heck even in a two hour eval with a person specializing in diagnosing autism my daughter was able to fool people because she likes indulgant adults who bribe her with her favorite playthings. Talk to your pedi but if she blows you off demand the referral to a specialist--you can't get it too soon.
For us EI has been an invaluable asset. Even though she didn't get her dx until closer to the end, the speech and occupational therapy helped her a ton. At her first Eval at 17 months she cried when people asked her questions and hid her head in my lap. She showed a bit of interest in the toys but mostly mouthed them. She had ten words she used mostly to label and she pushed me to things she wanted. At nearly three she responds when people talk. She uses hundreds of words to get her needs met or in play--yesterday she decorated my face with stickers and called me pretty.

She plays appropriately with a variety of toys and seeks you out to play with her. She still prefers to play alone in a situation with a group of peers but will join in if something is particularly motivating and is happy to see familiar playmates. She spends more and more time in our world and less in hers everyday. Even if you do get a diagnosis you will celebrate tons of milestones along the way you never thought you would.

MirandaHobbes · January 2014

Cmarie08 said:

She just doesn't express an interest in other children either, her age or not, it doesn't seem to matter. Some of my friends have children around her age and she just simply ignores them when we go to visit. I just thought she was shy for a while but when her language never developed like their's did, among a few other things, I started to consider maybe there was something else going on.

Yeah this was my son. Like DS wouldn't want to play in the forts with the other kids, or dress-up in pretend play clothes, or dance to silly music. My avatar is deceiving, it shows DS dressed up like a pirate. He hates dress-up and pretend. Now that he's older he just tells me flat out that it isn't real. Interestingly, he detests nonfiction books and will only read fiction.
I kept emphasizing mild because that's how I've been explaining it to my family. I guess I just got into the habit of it. Although, I was thinking that if it were a mild case that she would outgrow it or the symptoms would be minimal later on.

I totally get it- all too well. They told me this too. His first EI teacher actually pulled me aside and said DS was "one of her highest functioning kids" and she thought he'd "be just fine when he was older". The next EI teacher (when he was 3) said DS would likely be the 1 of 6 kids who was fully mainstreamed without support when he was in kindy- leading me to believe this was just a "phase" he'd outgrow. Perhaps some kids do "outgrow" symptoms (not really, they just learn to deal with symptoms better), but my son is having a tough time behaving like his other peers. He's almost 6. He had an invite to a playdate this week. It started off completely normally- DS was totally stoked to go visit this friend from his class. An hour and a half later he was agitated and ready to go home because they didn't have any toys he liked at their house and he wasn't interested in interacting with the kid at all, just stomping around their house going through their things and blathering on to the kid's parents about his latest special interest, Captain Underpants books.

Our next appointment with EI is next Weds., so I'll make sure and update afterwards! I'm curious what they will suggest. Do you have any experience on what kind of therapy they might suggest with a social delay?

I've heard of many different responses to this on this board. Some doctors recommend ABA or Floortime or a myriad of other approaches. Before DS was 3 it was all about getting him communicating so they started with PECs cards. Our EI coordinator came to our house once a week as did his Speech Therapist. We also took him to private ST once a week. When he was 2 they graduated him to a classroom-based program 3 times a week. They worked with getting him to interact with other toddlers. When he was 3 he graduated to a more structured 4x per week class (full half days) and we enrolled him in a private inclusion SN daycare where he received 3 afternoons a week of private "social skills" class. By the time he was 3 we were seeing a developmental pedi who recommended at least 15 hours a week of private ST/OT therapy in addition to the 10 or so hours a week of public school therapy. Gulp. I work full-time and there was no way I could make that work. Fortunately there exists these inclusion daycare/day treatment facilities where you can get everything at once (daycare, ST, OT, PT, etc). We really lucked out because by the time he was 3-4, he really didn't need ST any more- he didn't have a speech "delay", it was all social and communicative. As in, he could talk the ear off any adult but couldn't carry on a conversation, especially with other kids. So they had this special class set up- we paid OOP for it but the cost was manageable because they also billed insurance for a portion of it. The class was 6 kids with 1 teacher, 1 ST and 1 OT. The whole 2 hours a day was spent working on getting the kids to take turns, deal with sensory issues, and communicate with others.
This was supposed to be a RE:@Miranda

Cmarie08 · January 2014

She's terrified of adults, other than me and DH. She has terrible separation anxiety from me, especially. What's really odd to me is that, initially, she acts afraid of her grandma's. She sees both of them at least once a week, so there's no reason for her to be afraid. She's not playing with them either, she acts legitimately terrified. I'm not sure, but I think she's so hesitant to go with them because it breaks from her routine, which she really seems to value.

I've been hearing a lot of, "Oh, it's because you stay at home with her and she's your first."..Uh, no. I've tried putting her nursery at church, at the gym, and we've tried story time at the library. It's all the same scenario, over and over again. She cries hysterically the entire time I'm away when she's in the nursery and story time she wasn't interested in doing any of the activities or interacting with the other toddlers, she was just interested in the stacked chairs behind us. I seriously doubt staying at home has anything to do with this. Of course, they just focus on the fact that I'm with her all the time and completely ignore everything else I say.

I can understand why they're saying that because I know separation anxiety is normal for her age and I'm sure it's a little worse because she is around me all the time but still, it's annoying to hear that.

zoeyandsummersmom · January 2014

I cannot speak for an ASD dx, but if you suspect it and think you MAY need a developmental pedi in the future, call now and get on the waiting list for an appointment. Ours has an 18 month waiting list, so by the time your DD is ready to see them, she will be the right age. It may not be that way where you live, but for us we still have a long wait ahead of us.

d.f · January 2014

I'm pretty sure DS's general pedi still doesn't believe he's Autistic. She asked at his 5 year appointment if I thought he'd grow out of it. I told her no, I don't think he's been misdiagnosed. I think he'll keep progress and I'm optimistic for his future but he'll always be on the Spectrum.

Just after 3 (after preschool expressed their concerns) she flat out said she didn't think it was autism because DS kept playing with the vent after I told him not to and was looking back at me to gauge my reaction. She did offer me the referral (she was expecting ADHD), though.

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