When to seek evaluation?

OhSewCrafty · September 2014

My son is almost 4. He's always been a very social and bright child with distinct likes, dislikes, and a fairly low tolerance for being flexible. Recently, we've been approached by his preschool teacher, a family member, and a friend (who is a special education teacher) with "concerns." They all seem to be dancing around their real question - whether he's been evaluated for ASD.

There have always been things about Charlie that have made me wonder. He taught himself the letters of the alphabet from a toy at 20 months, then the phonetic sounds they make by 24 months. He has always had an intense attention span for things related to letters, shapes, and numbers and seemingly taught himself to write (letters, numbers, his name, and few other words) by 3 1/2. He is also fascinated by music and can point out almost a dozen instruments. The things he doesn't do, however, are engage in pretend play, dress up, making up stories/jokes, naming his stuffed animals, etc. It's like he doesn't understand it when we encourage him to use his imagination. He doesn't ask "why" questions and doesn't seem interested in anything illogical. He is fairly inflexible (pajamas need to match, he needs a spoon and fork of meals regardless of the food, etc.) and absolutely despises the store/shopping. He doesn't throw huge fits and will only growl/grunt or cry for a few minutes. We don't let him carry on and on. He speaks very well and can ask us for what he needs 90% of the time.

Tonight, we went to an event at my work that had an inflatable bounce house, rides, and cotton candy. He was immediately drawn to the lawn Scrabble game and spent an hour organizing the letters.

I'm so confused. I don't know what is normal and what is concerning. Maybe he's just a serious, introverted kid? His 4 year check up isn't for another few months and until then, I just get reports home from preschool that he's playing alone (most of the time) and hoarding toys to count them and organize them. We are currently getting tests run for GI and immune system problems and at this point with this incoming information, I don't know what to think.

Keeptruckin · September 2014

Hi! He sounds somewhat similar to my DD. She seemed to do pretty well in preschool, I think mostly because she had some sweet little old lady teachers who indulged her. Then kindergarten came and she had a no nonsense younger teacher. That's who confirmed for us we needed to seek another assessment. I think the biggest indicator is how he does with his peers? I knew my daughter was different from watching her with other kids. It doesn't hurt to get a competent assessment done. I remember watching a two year old pick up on a game while my 5 year old struggled. I mean we had no issues with her speech, she didn't do the repeats tie behaviours associated with autism, well she does but at the time we thought she didn't lol, but she struggled because the rules of a game changed mid play. The two year old ran with it while my kid just couldn't deal. We got a diagnosis at 6 just recently. Good luck!

Princess_Lily · September 2014

You can wait and see how he handles K, or start the ball on a private medical eval before it starts.

If you personally have questions in your head, I would seek one before. This way you could easily make a path for him in school if needed.

We chose a private eval before we've opted for free school evals. We have still yet to obtain a school eval. This way there isn't any incorrect dx's applied.

funchicken · September 2014

Welcome to the board! I second Auntie's advice. I would be concerned about the behaviors that you're describing.

My oldest (6) has an ADHD and SPD diagnosis, and she had some similar behaviors to your DS at that age. For DD I think the rigidity and need to organize things are anxiety-driven behaviors. We started a lot of deliberate sabotage around age four. I see that you have a younger DD. I have an NT three year old, and the experience of parenting her has made DD1's differences that much clearer.

We're here if you have more questions.

OhSewCrafty · September 2014

Thank you for your responses, ladies. I really appreciate it. My husband and I both work in education (high school and college, so not littles, but still) and we would rather have this figured out before he went into formalized education (he is in daycare/preschool at the moment). He won't go to kindergarten until fall of 2016 because of a late October birthday.

Thank you for your explanation of things, @-auntie-. This isn't the time to sugar coat things, so I'm cool with the up front information. To answer your questions...

We have a pediatrician appointment on Friday for him to be revaccinated (part of the immune issues we're looking at), at which I'm going to ask about all of this and ask for a referral. I honestly always thought he was just a smart and serious kid, but the older he gets (and the more I compare him to my youngest, like @funchicken mentioned), the more we worry. When you mentioned toys, I realized that the toys he enjoys are either electronic puzzle/letter toys, blocks to build, or things related to writing (he's currently engrossed in one of those magnetic lap board writing toys). He doesn't like cars, pretend tools, and stopped playing with his toy kitchen about 2 years ago. He does like trains and plays with them, but spends 90% of the time building and rebuilding the track and 10% playing with it.

We do not have any musicians in the family. My husband and I used to play guitar, but never have in front of him. He ADORES Little Einsteins and that's where he learns a lot of this from. I will never forget, at about 22 months old we were playing outside and he grabbed two sticks, tucked one under his chin and used the other as a bow proudly telling us he had a "byween" (violin).

To Charlie, inflexible doesn't mean a blow up tantrum. It means flying into an anxiety like we are tormenting him - heart racing, white knuckle grip, repeating his dislike over and over. He cries a cry of hurt, not anger. We have never not been able to calm him down, but it's over so many little things. It's heart breaking. We went to Hershey Park today and we spent 75% of the time negotiating him through these little fits to do things that I would think kids would love to do. He's been going to Hershey since he was tiny, but every summer we go back it's worse and worse.

I'm like you though, auntie, I'm organized enough to know how to avoid the discomfort. I've always just thought he was a particular quirky kid. Some things he couldn't care less about, but some things seem unbearable to him.

As for the social/introverted comments - I would consider him very social, but until you mentioned it, I never realized that he is very social....to adults.

He talks about his classmates, friends, and cousin constantly, but when they all get together, he more often than not plays alone and swats at kids that come near him. He *does* play with kids sometimes, but still in that side by side playing, not like playing house or pretending to be dinosaurs kind of play. My nephew (4 years old) has a tremendous imagination and a ton of energy - seeing the two of them together is like the Odd Couple. To adults, however, Charlie will hug and high five, smile, chat, play -- he's not shy at all. The introverted part comes in when he is just done and overwhelmed with people. When he gets home from daycare, he's wiped out and needs time alone or he melts down. I assumed that was an introverted personality. My husband is very introverted and needs that time to recharge after a long day.

I feel so bad for being so frustrated with Charlie over the past few years. We do so many "fun" things and go fun places and he hates it. Sometimes he'll play depending on the situation and environment, but most times he cries. He would rather sit at home. Most of the day today he was asking when we could go home.

Anyway, thank you for listening. There's just been so much going on with him (and my daughter with her own medical stuff) that I'm overwhelmed.

OhSewCrafty · September 2014

The whole CHOP thing is just for this immune system issue because we don't have a specialist like that in our network. Typically, we go to Penn State Hershey for things beyond the pediatrician's scope. I'm currently on an HMO and seriously considering finding the extra money for the PPO. My husband is currently unemployed after being laid off, so it's tight.

And yes, trust me, the immune system thing is freaking us out with Ginny's medical issues. Her immune system is normal, but if she gets sick her body has a heck of a time recovering from it. So, hopefully he won't be bringing too much home while on the antibiotics as we figure this all out.

We are in central PA and I'm curious what we'll find out here in terms of resources. He spent a year in EI (about 12-24 months old) for gross motor delay and a little bit of OT for adaptive/self care issues (not helping or flat out fighting us during dressing and washing) and that was a positive experience, not sure about the intermediate unit or what else is around.

We've never tried non fiction books with him. He enjoys almost any book, but prefers to read/play iSpy books before bed instead of stories. When we do read regular stories, he spends most of the time counting things in the book or pointing out shapes, colors, etc. but still enjoys hearing them.

Thanks again.

ToastieSimons · September 2014

I don't know much about the ASD end here, but I have our pneumavax story. Ds1's pneumococcal titers were very low. The pedi said it seemed as if he wasn't even vaccinated, but he definitely was. His immune system really struggled and he was sick often. We did the pneumovax and his tigers responded very well and his IGAM testing came back within normal levels. Our pedi said that sometimes the pneumovax can jumpstart kids immune systems and wake them up.

OhSewCrafty · September 2014

ToastieSimons said:

I don't know much about the ASD end here, but I have our pneumavax story. Ds1's pneumococcal titers were very low. The pedi said it seemed as if he wasn't even vaccinated, but he definitely was. His immune system really struggled and he was sick often. We did the pneumovax and his tigers responded very well and his IGAM testing came back within normal levels. Our pedi said that sometimes the pneumovax can jumpstart kids immune systems and wake them up.

Oh my gosh, I really needed to hear a story like this today, thank you @ToastieSimons. He's always been a sick kid with all kinds of infections and illnesses, but finding out that his body wasn't registering any vaccines (they checked pneumo, TDAP, and HiB) or antibodies to illnesses we know he's had, broadsided us to say the least. He's getting Pneumovax on Friday and blood work about a month later. I'm really, really hoping he responds like your son!

ToastieSimons · September 2014

OhSewCrafty said:

ToastieSimons said:

I don't know much about the ASD end here, but I have our pneumavax story. Ds1's pneumococcal titers were very low. The pedi said it seemed as if he wasn't even vaccinated, but he definitely was. His immune system really struggled and he was sick often. We did the pneumovax and his tigers responded very well and his IGAM testing came back within normal levels. Our pedi said that sometimes the pneumovax can jumpstart kids immune systems and wake them up.

Oh my gosh, I really needed to hear a story like this today, thank you @ToastieSimons. He's always been a sick kid with all kinds of infections and illnesses, but finding out that his body wasn't registering any vaccines (they checked pneumo, TDAP, and HiB) or antibodies to illnesses we know he's had, broadsided us to say the least. He's getting Pneumovax on Friday and blood work about a month later. I'm really, really hoping he responds like your son!

sorry for the autocorrect in the last post. We only checked his pneuomococcal titers and did a CBC. He had a fever 4 times in the month of June alone when his baby brother was born. yet he had fought off RSV fine. So it was so confusing. He was also mildly neutropenic prior to the pneumovax. His neutrophils were only 1000. Afterwards they were over 1500.

OhSewCrafty · September 2014

ToastieSimons said:

OhSewCrafty said:

ToastieSimons said:

I don't know much about the ASD end here, but I have our pneumavax story. Ds1's pneumococcal titers were very low. The pedi said it seemed as if he wasn't even vaccinated, but he definitely was. His immune system really struggled and he was sick often. We did the pneumovax and his tigers responded very well and his IGAM testing came back within normal levels. Our pedi said that sometimes the pneumovax can jumpstart kids immune systems and wake them up.

Oh my gosh, I really needed to hear a story like this today, thank you @ToastieSimons. He's always been a sick kid with all kinds of infections and illnesses, but finding out that his body wasn't registering any vaccines (they checked pneumo, TDAP, and HiB) or antibodies to illnesses we know he's had, broadsided us to say the least. He's getting Pneumovax on Friday and blood work about a month later. I'm really, really hoping he responds like your son!

sorry for the autocorrect in the last post. We only checked his pneuomococcal titers and did a CBC. He had a fever 4 times in the month of June alone when his baby brother was born. yet he had fought off RSV fine. So it was so confusing. He was also mildly neutropenic prior to the pneumovax. His neutrophils were only 1000. Afterwards they were over 1500.

I can't imagine having to deal with fevers and a newborn! Goodness, poor guy! I think the reason they checked everything for him was because his infections were varied. He's had issues with ear and lung infections and had c diff for over a year. It was crazy. I haven't gotten exact numbers on results, but will probably get more info when we meet again.

lite-bright · September 2014

Hi there. I have a 6-YO DD1 with ASD, dx'd at age three, and although we haven't had too much inflexibility, the hyperlexia (being precociously interested in numbers & letters) is very much a page out of the ASD book that we have experienced as well. She could read the alphabet by 20 months, and when she was sitting in the shopping cart seat, she'd list the letters off the handle -- even though from her perspective they were upside down and backwards. When we turned her carseat around at 23 months, every time we went past a railroad sign, she'd call out, "R! R!" because she read it on the crossing sign.

She has always preferred animal toys to dolls. Her play kitchen and food were hardly used. She names her toys after colors or simple attributes (like Blue-a, or Toothy/Toother, etc.) rather than actual names. She's excellent at riffing on a theme from, say, a book or movie, but not very good at creating a play scenario that's entirely made up.

I agree with the pps, there are some definite red flags that would push me toward evaluation.

I was in a similar boat with things not quite feeling right, and the head teacher from a rec center toddler class that DD1 had been in for about a year approached me and asked if we'd had her evaluated. She just basically said, "She doesn't process things like the other kids." And I could see it -- like when they were outside and all the other kids were racing cars around a planter, and my kid was the one off by herself throwing leaves in the air. Having someone confirm that my gut feelings were not just my imagination really helped me feel confident that we should pursue an evaluation even though I heard a TON of "all kids do that", "your expectations are too high," "all kids develop at their own pace," etc., even from my DH at first.

On the bright side, the hyperlexia has -- at least to this point, in first grade -- continued to be a strength for her. She was put into a first grade reading group in kindergarten and continues to be way ahead of grade level in her decoding skills.

Unknown · September 2014

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ToastieSimons · September 2014

McRib said:

ToastieSimons said:

OhSewCrafty said:

ToastieSimons said:

I don't know much about the ASD end here, but I have our pneumavax story. Ds1's pneumococcal titers were very low. The pedi said it seemed as if he wasn't even vaccinated, but he definitely was. His immune system really struggled and he was sick often. We did the pneumovax and his tigers responded very well and his IGAM testing came back within normal levels. Our pedi said that sometimes the pneumovax can jumpstart kids immune systems and wake them up.

Oh my gosh, I really needed to hear a story like this today, thank you @ToastieSimons. He's always been a sick kid with all kinds of infections and illnesses, but finding out that his body wasn't registering any vaccines (they checked pneumo, TDAP, and HiB) or antibodies to illnesses we know he's had, broadsided us to say the least. He's getting Pneumovax on Friday and blood work about a month later. I'm really, really hoping he responds like your son!

sorry for the autocorrect in the last post. We only checked his pneuomococcal titers and did a CBC. He had a fever 4 times in the month of June alone when his baby brother was born. yet he had fought off RSV fine. So it was so confusing. He was also mildly neutropenic prior to the pneumovax. His neutrophils were only 1000. Afterwards they were over 1500.

I think this is common with kids that have PANS/PANDAS and ASD. In my opinion, the immune dysfunction is related to the ASD. For my son and for many ASD kids the cause can be congenital illness such as Lyme, bartonella, babesia passed on from parent to child. The immune system crashes post vaccination due to the fact that it is already overburdened with multiple systemic infections (plus many spectrum kids are MTHFR positive so they have detox issues). Similarly, my son has no immunity to most of his vaccines that we have checked. Pneumoococal is one of the first ones they checked on each child. PID might be something to look into, CVID, and tracking down which infection is causing issues. Given that you are in a tick endemic area I would put my money on lyme and coinfections. Our immunologist specializes in PANDAS/ASD and has told us to stop vaccinating both children for now. Some signs to look for would be elevated infection markers, low vit D, low iron/ferritin, CD57 and infections such as HH6, CMV, EBV, bartonella, mycoplasma, borrelia, babesia.

@McRib Was this directed at me? Because my kids don't have PANDAS/ASD, they have genetic disorders. Just an FYI. Thanks though!

OhSewCrafty · September 2014

lite-bright said:

Hi there. I have a 6-YO DD1 with ASD, dx'd at age three, and although we haven't had too much inflexibility, the hyperlexia (being precociously interested in numbers & letters) is very much a page out of the ASD book that we have experienced as well. She could read the alphabet by 20 months, and when she was sitting in the shopping cart seat, she'd list the letters off the handle -- even though from her perspective they were upside down and backwards. When we turned her carseat around at 23 months, every time we went past a railroad sign, she'd call out, "R! R!" because she read it on the crossing sign.

She has always preferred animal toys to dolls. Her play kitchen and food were hardly used. She names her toys after colors or simple attributes (like Blue-a, or Toothy/Toother, etc.) rather than actual names. She's excellent at riffing on a theme from, say, a book or movie, but not very good at creating a play scenario that's entirely made up.

I agree with the pps, there are some definite red flags that would push me toward evaluation.

I was in a similar boat with things not quite feeling right, and the head teacher from a rec center toddler class that DD1 had been in for about a year approached me and asked if we'd had her evaluated. She just basically said, "She doesn't process things like the other kids." And I could see it -- like when they were outside and all the other kids were racing cars around a planter, and my kid was the one off by herself throwing leaves in the air. Having someone confirm that my gut feelings were not just my imagination really helped me feel confident that we should pursue an evaluation even though I heard a TON of "all kids do that", "your expectations are too high," "all kids develop at their own pace," etc., even from my DH at first.

On the bright side, the hyperlexia has -- at least to this point, in first grade -- continued to be a strength for her. She was put into a first grade reading group in kindergarten and continues to be way ahead of grade level in her decoding skills.

These are things that Charlie has done as well! Anywhere we are, he's pointing out letters.

I've also heard the "you're expecting too much" and "he's developing at his own rate, don't rush him" A LOT from family and friends.

That's great that she's excelling with the support she's receiving and that the hyperlexia can still be a strength for her. I've spent a lot of time wondering how he'll do in kindergarten with what he knows and what he doesn't know. :-/

OhSewCrafty · September 2014

-auntie- said:

OhSewCrafty said:

The whole CHOP thing is just for this immune system issue because we don't have a specialist like that in our network. Typically, we go to Penn State Hershey for things beyond the pediatrician's scope. I'm currently on an HMO and seriously considering finding the extra money for the PPO. My husband is currently unemployed after being laid off, so it's tight.

I know a few people in Hershey. They don't take their kids there for ASD related services. Most come east for services in Philly western suburbs or CHOP(Coplan, Ross), a few head to Baltimore and Kennedy Kreiger. Since you have no out of network coverage, though if you pick an HMO for next year or set up a Healthcare FSA things could be different by the time you actually see a specialist, KKI or CHOP might be best for you. I even know one mom in DE who encouraged her son to go to Pitt or Carnegie Mellon because of the services at CHOP (Pgh) if you want to head in the other direction.

Another option in your area (sort of, Lancaster) is Margaret Kay who is a psychologist who does private assessments. If I had a need to do a neuropsych on DS again, this is who I would use.

https://www.margaretkay.com/About_IEEusa.html

With your DH being out of work, it might make sense to get the dx sooner so you can access "Teddy Bear Coverage" which is non-means tested Medicaid for children with disabilities/serious medical needs. Unless that's the HMO you already have. Just putting it out there.

And yes, trust me, the immune system thing is freaking us out with Ginny's medical issues. Her immune system is normal, but if she gets sick her body has a heck of a time recovering from it. So, hopefully he won't be bringing too much home while on the antibiotics as we figure this all out.

We are in central PA and I'm curious what we'll find out here in terms of resources. He spent a year in EI (about 12-24 months old) for gross motor delay and a little bit of OT for adaptive/self care issues (not helping or flat out fighting us during dressing and washing) and that was a positive experience, not sure about the intermediate unit or what else is around.

Your local school district could evaluate for an educational dx. If money is tight right now, this might be the logical first step. You write a letter to the head of special services (not an email or phone call) requesting a multifactored eval for your child and include a few areas where you have concerns. You could include a note from his preschool teacher stating her concerns in an educational setting. This could perhaps get you an educational dx and some services. Maybe even a free preschool placement.

DS has been evaluated a couple times through the district- it's usually a mix of district and IU staff with the building CST coordinating.

We've never tried non fiction books with him. He enjoys almost any book, but prefers to read/play iSpy books before bed instead of stories. When we do read regular stories, he spends most of the time counting things in the book or pointing out shapes, colors, etc. but still enjoys hearing them.

There's a lot of learning for kids with ASD processing glitches in story books. They can be used to talk about feelings, motivations- the whole Theory of Mind thing. He needed work with this for the whole literature based language arts and history. We read a lot and talked about what we read. We had started little kid chapter books by this age, DS is an only so I only had him to consider. This is great practice for auditory processing and attention, too.

Thanks again.

It's very helpful that you're familiar with this area! I've lived here for a few years, but being so rural there aren't always people around to make referrals for what we need. My insurance is just a straight HMO with referrals for absolutely everything. Our pediatrician is great about organizing them though and even got us the out of network approval for CHOP in one shot. I'll look into Margaret Kay - she could still be in network despite the distance, but I'm not sure.

We got an appointment for Friday to discuss all of this while he gets his Pneumovax booster. Hopefully it's a productive appointment.

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