Special Needs

Question re: ASD assessment

law&orderlaw&order member
edited January 2014 in Special Needs
I'm wondering if anyone has thoughts on what might be an appropriate age to assess for autism where the presentation may be very subtle and limited to peer-to-peer interaction issues and some rigidity?  

Preschool has raised no concerns, but it's been on my radar for a while given his sensory issues.  He passed the M-CHAT. Has great joint attention. Plays parallel with kids at school, talks to the kids in his class, participates in circle time, group activities, and the teachers say he does run around with the kids.  But I don't see this if we're in a setting with other kids.  I notice a lot of shyness/apprehension around kids that are strangers. He won't usually join other kids at the park, for example, unless they are kids he knows from school.  

I realize that if he is on the spectrum, it will become more apparent as he ages and his peers become more social.  But I'm having trouble parsing out what is a "normal shy 2, with some SPD issues" vs. ASD indicators. 

We're accessing the services he needs at this point- OT (in the next few weeks) and feeding group (summer). And even without OT, he's been doing well in preschool. Is there a benefit to a "wait and see" approach if we're accessing these services and he's responding well?  

ETA- the psychologist at our feeding team assessment saw no problem with doing OT and giving him some more time before pursuing an assessment.  But of course I'm second guessing everything about our parenting right now!  :-/

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Re: Question re: ASD assessment

  • I would probably work on getting a developmental pedi referral now because it will take some time. My Childs presentation is very subtle as well --great joint attention, shares interests, engages you in pretend play, etch with regards to familiar adults but struggles with unfamiliar adults and peers as well as sensory issues. She got dx a month before she turned three.
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  • They gave us the info for the Developmental Evaluation clinic at our Children's Hospital, staffed by psychs. They do Bayley Scales, ADOS, and I'm not sure what else.

    Is there a benefit to pursuing an eval with the developmental pedi over the psychs?

    I guess I'm wondering if, for example, an Aspergers-type presentation could be diagnosed as early at 2.5 or 3. From what I've read on the hospital website and their autism institute site, that type of presentation would be diagnosed closer to school-age.
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  • Ds had senstivities for as long as I could remember. We started out with just OT & ST since 2.5yo. At 4yo we decided to seek a more in depth eval privatley, this way, come kindie, he is already eval'd for placement purposes if necessary. I felt we took the therapy route as long as we could, I thought the therapy was helping, but in my heart he had some difficulties I couldn't place and they couldn't answer.

    We went with a psychologist for eval, its been approximately 5mo since we started eval. Ours is able to test for ASD, ADHD, LD's and more. We are waiting on results now.

    Developmental pedi offices test for above using educational evaluators as well as a psychological workups...they can provide medication too.
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  • -auntie- said:
    I posted the DSM-5 ASD criteria in the "This sucks..." thread- the text is highlighted in blue.

    The Aspergers dx is no longer official and shouldn't really be given, though I am noting a trend where clinicians tell parents their child has a "more Asperger presentation" or "Two years ago, I would have given him an Aspergers dx" as a way of differentiating between degree of impairment and atypicality. I guess "Aspergers" is the new "mild"; "mild" being the descriptor used by every single clinician describing all my AS-mom friend's kids. It's like Lake Woebegone. 

    If I were in your position, I would find out how long the wait is to see a specialist. In some places, the best people have 6-12+ months long wait lists and decide from there when to make an appointment. 

    There are a lot of reasons for delaying a private eval> It may turn out that your DS is just shy by nature (this often runs in families and causes great angst for the parent reliving their own shyness) and will begin to be more comfortable socially in a few months. It could be his sensory issues are impacting his social behavior; my DS hates the voices of some little kids. He has perfect pitch and certain tones and singing voices make him BSC. DS improved around this with maturity, good thing since he often volunteers with LOs in his capacity at the RR- they always stick him with the Birthday Party trains. Being older means they can use more and better instruments in the evaluation- like a WPPSI or WISC to get some idea of IQ and a fuller Vineland to look at social, communication and adaptive behaviors that can be really subtle.

    DH can be shy. MIL is painfully shy. 

    I've heard of a couple kids with Aspergers being dx around 4- 4 1/2. In one case the boy was a younger sibling of a brother on spectrum and was enrolled in a sibling group study. His presentation was pretty classic Aspergers. The other had really significant hyperlexia with advanced speech and reading by 2 1/2. Most kids with Aspergers get picked up in kindie or beyond- a significant number around 4th grade or even middle school. I don't know any local clinician who would have dx'd Aspergers under age 3 since the criteria include age appropriate speech and adaptive skills by age 3. 

    Yeah, this is exactly what I'm wondering. He did not qualify for EI services (eval'd last week). He had the Bayley at 22 mos- no concerns noted, other than slightly delayed in speech, but still within normal range. 

    FWIW, nothing you write screams Aspergers. It can be really hard to tease out autistic behaviors in twos, threes and even fours since they're such a quirky bunch as a group. 

    And yeah, that's where I'm struggling. Especially, since, per his teachers, he's behaving as expected for a 2, in a class full of 2s :)  

    You don't mention any special interests; does you child have a fixation on a topic, toy or something that drives your family life? He likes trains, trucks, etc. but I wouldn't say it's ruling our life. He can, and does, enjoy other things. He also seems to rotate what interests him- lately he's taken an interest in how trailers work (hooking on trucks, etc.) after he saw my dad hook up their Airstream. 

    Does he have an awkward gait, low tone or difficulty crossing the midline? None of these, except the OT during the feeding evaluation noted possible core weakness. He fell out of his chair.  And some proprioceptive differences (large bites).  

    How inflexible is he? And what happens when things don't happen as he likes/expects? This one is hard for me to judge. He's much worse for  me than for others! At school, he transitions fine between activities. For me, he'll tantrum if he's not liking something. They are over relatively fast though.  Again, I'm not sure it's all that different than another 2yo. 

    Do you see any stimming? Flapping, finger play, toe walking? I notice he likes to lie down to drive trucks. And it was on the sensory profile questionnaire we filled out. But, again, I'm not sure if this is a thing.  I was at his school and we set up train tracks and trains and he was playing alongside two other boys 2/3s who were alternating driving from above and then lying down to watch the trains. So I don't know if it's normal or not :( 

    Do you hear echolalia? Repeating dialog from shows or even people IRL? How about jargoning? I do hear him repeat some phrases from IRL, usually in the right context though. Not sure if that matters.  He has had a hard time with pronouns, but it's improving and the SLP in the evaluation said he's within normal range.  She also has 10 yrs experience as an ABA therapist, so that eased my anxiety a little. 

    Is he very social with and prefer adults? Even strangers to children? He's very social with his people- parents, grandparents (who provide some childcare).  I'd say he's shy with adult strangers too. 



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  • Thanks everyone.  I do appreciate the feedback. 

    I think I sit in a spot where I know too much (several years representing foster youth, reading developmental evals, etc. and a few years doing special ed law right after school) and I know too little (I'm clearly no expert in child development, DS is an only, etc.)

    I may call the developmental evaluation clinic at the children's hospital and inquire about wait times, just so we have that on the radar.  In our city, all pediatric specialties are through the children's hospital and an affiliated university. So any dev pedi will be through them.  The dev pedi website says a wait of 1-3 months with increased demand at the beginning and end of school years. 
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  • Id get in now. During our first eval i definitely got the impression that i was an overparanoid mom who thought language delays=autism. however she said she'd see her back in six months but could see her sooner if anything drastically changed. the month before her follow up she started reading and we knew we would get a dx. my child spoke words during the eval, answered yes /no questions, played with the test administator, etc and was still dx. its not only nonverbal kids with classic autism that can be dx young. it was all really subtle stuff like shifting her eye gaze ever so slightly when smiling or crying.
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  • My daughter was evaluated for ASD at 3.  I started having slight suspicions at 2 1/2, but I didn't think toooooo much of it.  Our county does not give ASD diagnoses until age 5.  My daughter was formally diagnosed last summer and her symptoms / strengths / weaknesses are much more apparent now.  It wasn't a surprise to me.

    In my opinion, better safe than sorry.  If there are red flags, they will pick up on them and the therapy is great, even for a typically developing child.
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  • Our pediatrician first brought it up to us at my son's 2 year well check, but he said to wait until closer to kindergarten. At the time, he was some delays in language and social skills, behavioral challenges, and sensory issues. We waited and I wish we hadn't, because now at almost 3, he just had an evaluation with the early childhood team because he is aging out of EI. He was found to have significant language and social delays, sensory issues, and several indicators of ASD, so we are now going through the evaluation process with the school district. I was told that it'll be 9-12 months to get a medical diagnosis, at which point he'll be 4, or almost 4. Our insurance doesn't cover therapy without a medical diagnosis, and the school can only offer limited services since he would be considered high functioning due to his cognitive and motor skills testing so high. He does a great job of, I guess, appearing typical. He preschool teacher, while very young and inexperienced, was completely shocked to find out that we had any issues with him. So I spent a lot of the last year second guessing myself.

    It's frustrating. A lot can happen in a year and I really wish we had gotten started on the process because now we'd be getting the help that he (and I) so desperately need right now.
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  • Thanks again for sharing your experiences.  Today I scheduled DS for a 4 hour assessment with a psychologist in mid-May.  

    Our feeding team coordinator called me today and said that the psychologist on the team found a colleague at the children's hospital who does accept our insurance. I love this team so much. I finally feel like they *get* him and they understand my concerns. 

    She had appointments in March, but they were 2 two-hour appointments one week apart, smack in the middle of lunch and nap, so I opted for the one 4-hour appt in May.  

    Is there a general ballpark cost for self-paying for an assessment? I'm just curious because there are other providers who could see him earlier or who are at the autism discovery institute (same hospital), but don't accept our insurance/mental health benefits.  

    And for now we're tackling the SPD and feeding issues and hoping to get into OT very soon :) 

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