I hope it's ok if I post here

Meery82 · March 2014

Hi, I'm not even sure if it's okay for me to post here, but I'm not sure where else to do so. Please forgive me, this is a long post.

Today, my son's daycare director asked me to come in her office and told me that she is concerned about Jack and thinks he should be screened for autism. Apparently all of his teachers agree. She also said that a therapist who was in Jack's class observing another child mentioned that she thought he showed some signs.

A little background info: Jack is 21 months. He didn't walk until he was almost 17 months old. From what I've heard, that's not even considered late walking, but the pedi was concerned and thought he should see a therapist. I thought he seemed so close to walking and that we should wait a few days and then call if we saw no improvement. The kid started walking 2 days later. A few weeks later, he went back to crawling. He appeared to be losing his balance. He had multiple recurring ear infections and had had fluid in his ears for at least 4 months. He had tubes placed in early December 2013. He almost immediately went back to walking and now runs. He even started talking much more.

The daycare did a skills assessment on him a few months ago and said he scored pretty poorly. They gave me a copy of the assessment and told me that they attempted to get the child to perform a task once, then moved on to the next task. Most of the things on the list were things that Jack does do when he is at home with us. I took it to his pedi appointment and she said not to worry about it, it was very inaccurate. The tasks were things such as point to certain body parts, say different words, etc.

Jack is a very friendly, happy child. He smiles, he makes eye contact, and appears to play appropriately for his age. He enjoys snuggling and gives hugs and kisses. He babbles, but also says quite a few words: mama, dada, gah-ma (grandma), hi, bye, yes, no, peez (please), thank you, Cookie, Roo (our pets' names), one-two-three-go!, Barney. There are more that I'm forgetting, I'm sure.

He also rocks while standing or sitting on the couch. When on the couch, I've only noticed it when he was watching TV. He will sometimes walk on his toes.

The daycare told me they noticed the rocking, even when there is no music playing. They said they've seen him wringing his hands (me, my husband, and our families have never witnessed him doing this), and "zoning out" occasionally. They also said he doesn't interact well with the other children.

Jack attends daycare 3 days a week, and sometimes, only 2 days a week. I don't know if they really see him enough to get an accurate picture. He has been sick with a cold, so today was the first day he was in daycare this week. DH and I went to pick him up together. They were playing outside when we arrived. We watched him through the window for a few minutes. He didn't really seem to interact much with the other kids, but none of them really seemed to be interacting with each other. He also isn't back to 100% from his cold.

I get the feeling that he acts quite differently at daycare than he does at home. Im not sure if maybe he really has an issue or if maybe he is unhappy at the daycare and is withdrawing. He seems happy when we go in the morning, but cries when I leave (but I think this is age appropriate).

DH's cousin is 21 and has a moderate form of autism. His mother, DH's aunt, said she has never noticed Jack being delayed and has stated that he seems to be quite intelligent.

I don't know what to do. I feel lost. I know so, so little about autism. They director suggest I have the therapist come and screen him (the same therapist who said she noticed him when observing another child, actually). I did leave a message for the pedi and expect to hear back from her tomorrow. Can anyone please share some advice and tell me what my next steps should be? I would really appreciate it.

mommy0411 · March 2014

Welcome! You are of course welcome to post here! We have the nicest group of ladies you will find

My DS was autism and he was diagnosed at 21 months. Your next step really depends on how concerned you are. It sounds like your DS has some great strengths! Does he use his language to communicate with you and share experiences with you or just to get his needs met? If this is something you are concerned about I would ask your pediatrician for a referral to a developmental pediatrician or psychologist. They can do the specialized assessments that are required to diagnosis autismor other developmental issues. They are the best at determining if your DS is showing red flags or is just a little quirky (and all toddlers are pretty quirky individuals

). I understand your concern about your DS acting differently at daycare, however it is really important that kids are able to use their skills in all areas of their life. When my son is learning a new skill in therapy, they don't consider it mastered until he can do it at home with us and with his therapist. And I personally would not have the same therapist observe him who was at the daycare. It sounds like a conflict of interest and you probably want someone who specializes in autism or developmental disabilities to do it. Good luck and feel free to ask any questions!

funchicken · March 2014

Welcome! My oldest DD has ADHD and SPD. Please feel free to post and ask questions. The ladies on this board are very helpful and supportive.

kcisthebombdotcom · March 2014

Welcome! I have a little girl on the spectrum and she sounds like your son in lots of ways. I would say her word list was nearly identical when she started speaking. Scripting the 1-2-3 go is still really popular with her and one of the words she used most consistently was her fav television show. We had the ear trouble which helped contribute to language delays and the ent told us that's very common with kids on the spectrum. She's always acted way differently at home vs a group of kids her age. She's very social and engaged with people she knows well. She's always had good play skills and has an active imagination. It took her a long time to do things with teachers and therapists that she had mastered long before at home. I think its a good idea to explore the possibility of autism. At this age you probably won't get much of anything with decent social and play skills but its good to get in with a developmental pedi to follow his development especially with the delays combined with a family history of autism. Just because he doesn't act like his autistic uncle doesn't mean a whole lot. I am in a support group of parents who have children with autism and there are a wide range of iqs and while there are a few common themes our kids have very different strengths and struggles.

hopanka · March 2014

I would call EI (early intervention) and set up an eval. Not sure which state you are in, for us in Cali you call your local Regional Center and the eval process along with therapy is free. I know some states have a sliding scale. Talk to you pedi and request info on that, along with a recommendation on which devel pedi you should see. They have long wait lists, so do that now. You can always cancel, not the other way around. My advice would be to not wait it out, my pedi suggested that, because DS presented so mildly, and Im glad I was pushy. He has a Dx now. Good luck!

bumpuser511563 · March 2014

Welcome to our board!

A lot of the PP's have given good suggestions to get started.

brachysira · March 2014

I think you've gotten some good advice. People love Early On. Your doctor will also be able to direct you to a respected dev pedi, which may be a stressful appt and take a long time to schedule, but it feels good to get more information. The daycare people may be idiots, but since they observe many children every day, you can't dismiss their observations, although they may be totally off. I think it is weird that the daycare has suggested a therapist and that does seem like, if not a conflict of interest, at least not who I would choose since you don't know anything about that person and why the daycare recommends him to people. Perhaps he is a friend and needs the business, and that is not a reason to have your child evaluated or a reason to choose someone for something so important. I think you are on the right track with talking to your doctor, but don't let the pedi dismiss everything the daycare says just because that would be easiest to hear. You can probably call Early On yourself, without a referral.

CCinLove · March 2014

I agree with the suggestions you've been given. Definitely contact your state's early intervention program for an evaluation ASAP. Services are free in many states, so you will want to get him set up as soon as possible if he qualifies. I would be very concerned if multiple teachers told me that they saw Autism flags. What have you observed with regard to his interactions with other children?

My son sounds A LOT like yours, including the late walking, great eye contact, and ear tubes. I was pretty skeptical of the diagnosis, but I chose to focus on him getting the services that are going to help him thrive rather than get too caught up in the details of why he needs those services. It is much easier for me to see it now that he is 5 than it was when he was 2 or 3. Autism can be very subtle. To this day, most people would never think that my child has Autism. It's only when you pay attention to things like his inability to go back and forward with classmates in a conversation more than once or twice that you can see how he is affected. The professionals were able to pick up on some really minor things and predict that he would be struggling in the ways that he is now. My child interacts and converses with me as if he does not have Autism, so I've had to accept that his teachers will have to be responsible for noting things that he needs to work on when he is not in my presence.

That long ramble was to say that many of us have been where you are. Your son may or may not have Autism, but you will never regret having an evaluation done to either rule it out, or get him the services that will help him.

Meery82 · March 2014

I'm going to try to answer all questions and give an update, so hopefully I won't miss anyone.

He does use language to communicate, but also to have his needs met.

He will say Barney when we start to turn the show on for him. He says it on his own, not just repeating us. He loves Barney. "One-two-three-go!", he learned from my husband. Jack will say it when he wants us to run so he can chase us or when he wants someone to drag him around in a laundry basket (we really need to get him a wagon!)

The therapist who made the comment; I believe she is a speech therapist. I'm not positive. She works for a company that has speech and physical therapists. I've left her a message but not heard back yet.

I know his autistic cousin probably has nothing to do with him, but I just wanted to throw that in there for you guys, especially because DH's aunt is very educated on the topic.

We live in Illinois.

Jack will pay attention to other children, but I do see parallel play. Isn't that the norm at this age?

I am definitely not discounting what the daycare is telling me. I refuse to be a parent in denial. I just want to make sure I look at every possible scenario. Children are their specialty and if they are saying he needs checked out, I can't just ignore them. Doing so would be a disservice to my son. But, damn, I sure hope they're wrong.

We had an appointment with the pedi's nurse practitioner this afternoon, mainly about his cold/ear infections, but I told her all of this as well. She gave me some phone numbers of places where he can be screened. She did say that he doesn't show a lot of autism signs and was skeptical. I talked to the pedi for a minute while we were there and she said the same thing. But they also said it is definitely something to check out, if not for anything but peace of mind. My husband and I totally agree. I understand that the earlier the intervention, the better. Our plan is to get him through this illness, get him feeling better, and contact these interventionists on Monday, set up appointments, and go from there.

Thanks everyone for your replies and support.

macchiatto · March 2014

Welcome to the board. That must have been hard to hear and I know it's a lot to process and try to figure out. The other ladies have covered a lot. I have a son who's 5 and kind of "on the border" for ASD. I've had some concerns since infancy (due to unusual eye contact, lethargy and "floppiness") but he was also sweet, smiley, hit his gross motor milestones at the late end of the normal range; our pedi chalked a lot up to personality and he didn't get into Early Intervention till he was almost 3. He also has tended to act different at home versus school, though now he does a lot better at school in terms of his social interactions. Keep us posted!

macchiatto · March 2014

I agree with fredalina. Especially with kids who are high functioning/more subtle presentations; IME, the signs are there but they are easier for people to miss unless they have more specific expertise and experience in that area.

Meery82 · March 2014

I did forget to mention that the NP said there are a few developmental pedis in the area, but they apparently have a ridiculous waiting list, like a year long. She said it would be better to start with these therapists to have him screened.

Also, someone had asked about his facial expressions in my sig pictures. I think those are just a coincidence. He does seem to have a wide variety of facial expressions and can show emotion.

Thanks again. I will be sure to update.

macchiatto · March 2014

I agree that scheduling the devel pedi appt now and proceeding with other screenings in the meantime makes a lot of sense. We did Early Intervention and PT, OT and speech evals and then the school district eval as he was turning 3. We contacted devel pedi a few months into all that and he had been in therapies for almost a year by the time the devel pedi saw him. In a way it was helpful to have all that data from the other evaluators/therapists ... and to know what they'd picked up and had concerns about--and be able to take that info to the devel pedi as well.

FWIW, there have been concerns about ASD for my son for most of his life and we've gotten very mixed feedback on the possibility of that diagnosis for him; what makes the most sense to me at this point is his devel pedi's conclusion that he seems to be near the cutoff and should be followed for it and getting services for a social skills delay along with OT. So even at 5 it's still kind of murky but I know we're doing everything we can to help him grow and thrive, and he has made a lot of progress thanks to the therapies and preschool he has gotten so far.

hopanka · March 2014

Auntie, i've heard about most people that you listed as ASD suspects as well, but Patrick? Lol, that is hilarious!!

Unknown · March 2014

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Meery82 · March 2014

McRib said:

My son was similar. You can't see the 'autism" (or for us, PDD NOS) at home but you can see it more in sensory rich enviornments such as daycare when he is overwhelmed. The great news is that he is super young. I'd get in to t see a diagnosing neurologist or dev pedi ASAP (the wait can be long) and start considering extra services since he is still under 3. We got my son a ton of services (OT and SLP) and then switched to ABA at 3. Also, the falling down a lot sounds like my son. It turns out his autism is actually lyme disease and so he would fall down some days 10 x and then be very graceful the next day. I can tell you more about that if you think he might be at risk. We did the biomedical approach and that allowed us to look for things traditional doctors do not look for- othewise we never would have known he had these infections. My kids were born with lyme and I never even knew I had it (my only symptoms were depression and anxiety). Good luck. If it is autism there is a lot that can be done for your son.

Thanks. I would like to hear more about the Lyme disease.

Meery82 · March 2014

We have an autism screening scheduled for Friday morning. I will let you all know how it goes.

Meery82 · March 2014

The screening went well! They said they don't see anything that is cause for concern. They don't even think he would come close to being considered borderline. We are so relieved! Thank you all for your comments and support.

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