Scheduled my 15 month old for an evaluation

[Anonymous]

OP,

17 months is very young. Not to say that he is or he isn't, but diagnoses do morph over time. A diagnosis will probably be helpful in getting insurance coverage with anything not covered by early intervention services. Keep doing what you're doing in terms of treatments. You can always re-visit the issue of a diagnosis when he's older.

[Anonymous]

Anonymous wrote:OP, I can't imagine how hard that must have been to hear. Hugs to you. It sounds like you have regrets about not calling sooner and since I work in Early Intervention I can tell you that you are very much on the early side in terms of getting started with services. Many of the kids I see haven't been started until much later - 24, 36 and even 48 months! You are doing all the right things. Early intervention can really make all the difference and it already sounds like there has been noticeable progress made, which is a really great sign. I also agree with a PP that you should get a second opinion however I would wait until DC is a little bit older and has had more time in intervention services-so that you can get more information about strengths and needs. Children's or Johns Hopkins can do a full eval (and they take insurance) or EI can have a psychological done. If you put his name on the wait list now at Children's or Hopkins it will be a few months and he'll be older by that time anyways. In the meantime talk to your doctor about having bloodwork/genetic testing done on your son to rule out any medical diagnosis.

+1 I used to work in EI as well. Most children I've seen coming in with this dx were 2 1/2 or older. It is overwhelming, but there are a lot of helpful support groups and resources. Please ask your therapists or Service Coordinators for some of those. There are usually Social Workers who work in EI, not to report back to CPS (a lot of my families worried about that!) but who are there for this exact reason, to help the families deal with the psychologial impacts of having a child who is different than the one they expected. Please reach out to them and let them know how worried you are -- it's part of their job to help you get your head wrapped around this so you can be as present for the little one as you can. As someone who has been on both sides of this, it really helped me to meet families with older kids, to see how they were doing okay and how this dx wasn't life-ending, just life-altering.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

OP, I am very sorry. I can't imagine what a shock this must be for you. I don't know what the right thing is to say here... I don't know any friends or family who have kids with ASD, but as I'm worried about my own son (I am the PP with concerns about my now 13 month old), I just really, really feel for you right now. Please, please keep us updated on your DS. I will be thinking about both of you.

And in regards to my son, I read the post up thread that indicated I may not need a referral from our Ped. We are in MoCo, and so I will call Infants and Toddlers tomorrow to see whether I can schedule an initial evaluation without a Ped referral. After spending all day the past three days with my son, and seeing on Saturday how different his very slightly older (3.5 months) cousin is, and now reading of OP's son's dx, I am really quite concerned. I KNOW he has delays, especially with communication, despite everyone else continuing to tell me not to worry.


You don't need a ped referral in MOCO. http://www.montgomeryschoolsmd.org/departments/special-education/programs-services/infants-and-toddlers.aspx Call and they will schedule you fairly soon. Good luck and keep up posted!

[Anonymous]

ASD diagnoses before age 3 are wrong more than they are right.

Even seasoned clinicians find a differential diagnosis at young ages difficult. Receptive language issues often look like autism. Joint attention and the ability to read non verbal cues are what tell ASD children from children with language issues.

Get help for your child, but be skeptical of an ASD diagnosis at that age.

[Anonymous]

Thanks for the updates, OP. I know what a shock this can be and how bleak reading the evaluations can make you feel. I'll echo something a PP said about, after a while, you'll realize this diagnosis is life altering but not life ending. Regardless of the diagnosis, what you're doing right now is what your DS needs - that's what's important, not his diagnosis.

If you're interested in a second opinion, I highly recommend the NIH studies. There are a number of them involving ASD and other developmental delays. You can search the studies here http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_06-M-0065.html@autism@@@@ . I pulled this one http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_06-M-0065.html@autism@@@@ because it looks similar to the one we participated in. We started with DS1 when he was 5 because we knew something was going on, couldn't figure out what, were waitlisted for a dev ped and were told by Child Find (incorrectly) that because he was K eligible age, we had to wait until he started school before getting an evaluation through them. They did extensive testing - which was helpful when we were going the IEP route but his delays weren't significant enough for him to continue in the study,

DS2 was a different story. He was @20 months when he joined. He had most of the symptoms you described and was already enrolled in EI PT (gross motor delay greater than 25%) and waitlisted for speech. We had concerns, of course, about ASD but he didn't seem to exactly fit the profile. The research team was awesome. DS did NOT like being there and we had to complete the testing over 2 days. At the debrief, they definitively rules out ASD. He was later diagnosed with apraxia/MERLD/ADHD (inattentive). Now, some people will say those diagnoses are 'soft landings' for ASD and perhaps in some cases they are but not in our case. As he's gotten older, it's become more apparent that he is not on the ASD spectrum. It would have been okay if he had, we wouldn't have done anything differently but it's nice having information. Hugs.

[Anonymous]

Dear OP,

I read your post last night and I can't stop thinking about it.

When I first read it, it looked like my son to a T at 15 months, although rereading there were some differences (my son was pointing as of 12 months, full term, wasn't behind on fine motor, would get upset before 1 hour with toys -- ie 2-3 minutes if someone he knows wasn't in the room).

We almost had our son evaluated but didn't because by the time the appointment came around he had started speaking, walking and other things. That is, he was late bloomer. I am not telling you this to get your hopes up, but really to ask about alternatives.

Anyhow, I've read your story and how its progressed. I do see that your son is behind on a variety of milestones, but I admit to being really surprised at the ASD diagnosis, particularly so early. Particularly his social skills seem reasonable ,especially the part about how he makes eye contact and at 17 months has 14 words, which is great!

What I am saying is that having seen a bit of a quirky kid,
I want to encourage you to get a second opinion and make sure no one person's opinion (other than yours!) makes huge differences in how your son is treated and cared for. Have you considered a developmental pediatrician?

My son is definitely on the nerdy intense side, not extremely verbal, but he finds his niche. You should DEFINITELY get all of the services your child needs right now to address a pervasive set of delays, but I would keep an open mind (for better or worse) about how your child will progress. We really know a lot less about child development than we should.

I wish you the best of luck, and am happy to chat if you ever see a reason to. Your son is so lucky to have a thoughtful mother who is taking amazing care of him.

[Anonymous]

Op, I too keep thinking about you. We are on the same journey. My son is only 24 months, and we haven't ruled anything out or in, we are just treating symptoms. We have scheduled with a developmental pediatrician. Right now we are doing speech therapy and normal preschool. Our son seems to be on the very low end of normal, below normal in some areas. Like your son, I have some ASD concerns. He flaps a bit, shakes his head, isn't verbal beyond naming things. But he knows our names and laughs often, and constantly demands help/attention/engagement, so I guess we have not been too concerned about autsim. At this point, I tend to think we have a global delay, maybe some LDs, maybe ADHD...He was also preterm, so I am loath to have him diagnosed too early. I know some preemies go through speech/sensory issues that look alot like autism but are overcome through therapy. I would definitely make an appointment with a dev ped. At this point, and at every point, you have to remember that the goal is to treat the symptoms.

[Anonymous]

I'm so sorry OP. Its great that you're getting therapy at such an early age! I also concur with others that he's too young to really diagnose with full certainty. Keep doing the therapy and consider another evaluation later with a different practitioner. More eyes is better.

fwiw, our son was diagnosed with severe adhd when he was a very young 3 by a very well respected dev. ped. We were expecting to be dealing with special needs schools, medication,etc, by the time he was 5. When DS was 4, he was re-evaluated by the same dev ped who said that in fact he had been incorrect and that DS's issues, while there, were mild to maybe moderate and that he was flourishing in main stream school (which was nice because I had doubted the dx myself, but I was no expert....). DS definitely has challenges--visual motor processing, mild dyspraxia, attention and sensory issues--but we felt SO down when we first got the dx and we do not feel that way now. We realized later that DS would continue to grow and change and there was so much we could do and that a dx at early 3 is not necessarily a sentence for life.

[Anonymous]

Anonymous wrote:

ASD diagnoses before age 3 are wrong more than they are right.

Even seasoned clinicians find a differential diagnosis at young ages difficult. Receptive language issues often look like autism. Joint attention and the ability to read non verbal cues are what tell ASD children from children with language issues.

Get help for your child, but be skeptical of an ASD diagnosis at that age.

I do not agree with that, but I would say ASD diagnoses before 24 months of age tend to be premature. I have 3 kids on the spectrum (I posted in the other thread about the signs), with my youngest being diagnosed at 26 months. The signs became more and more apparent between 18-24 months, but she would not have gotten the label at 18 months old. The increase in language and the (slight) increase in social demands was what truly brought it out. Although she is high-functioning (she is verbal), she has always been very reserved outside of her familiar environment, and I frankly hoped she would just be "painfully shy" (Something that we would have addressed as well but that wouldn't have required the same amount of intervention as maturing can help with that), but I had a gut feeling that she, too, was on the spectrum.

Both of my older children had neuropsychological evaluations done last year to ensure that the diagnosis is indeed still accurate, and it is. But they have definitely made HUGE progress thanks to EI.

OP, please do not let the label defeat you. I would seek out EI services and continue educating myself on spectrum disorders, but in the end it is all about treating the symptoms, just like a PP stated.

[Anonymous]

Anonymous wrote:Op, I too keep thinking about you. We are on the same journey. My son is only 24 months, and we haven't ruled anything out or in, we are just treating symptoms. We have scheduled with a developmental pediatrician. Right now we are doing speech therapy and normal preschool. Our son seems to be on the very low end of normal, below normal in some areas. Like your son, I have some ASD concerns. He flaps a bit, shakes his head, isn't verbal beyond naming things. But he knows our names and laughs often, and constantly demands help/attention/engagement, so I guess we have not been too concerned about autsim. At this point, I tend to think we have a global delay, maybe some LDs, maybe ADHD...He was also preterm, so I am loath to have him diagnosed too early. I know some preemies go through speech/sensory issues that look alot like autism but are overcome through therapy. I would definitely make an appointment with a dev ped. At this point, and at every point, you have to remember that the goal is to treat the symptoms.

Thank you. Your DS soudns delightful.
If DS were pointing, I would not be worried. But that is a major flag. I read so much, and haven’t been able to find one case of a child with ASD pointing before 12 months. We have been working on pointing a lot, and DS still doesn’t get it.

[Anonymous]

OP here. Thank you, PPs for the kind words and support.
I circled back with the therapists and his pediatrician. With the exception of the OT, where DS made a lot of progress, the others clarified that they were surprised of his Dx because of his age, and because his symptoms seem relatively mild. His pediatrician hasn’t had any kids in his practice diagnosed this early, and neither had the EI program. No wonder, if the pediatricians don’t make referrals until after 18 months…
I also talked with one of the psychologists from the panel that made the Dx. He’s sure DS has ASD, agrees that he has a good foundation and his symptoms aren’t severe, but still said couldn’t give me a favorable prognosis based on that alone. After a 2 hour session with him, I still pressed on about where DS is on the spectrum, and he said that, given DS's strong social skills, he would have probably been diagnosed with PDD-NOS under the old criteria.
DS is making progress already. We just started ESDM and it seems to work well for him.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

ASD diagnoses before age 3 are wrong more than they are right.

Even seasoned clinicians find a differential diagnosis at young ages difficult. Receptive language issues often look like autism. Joint attention and the ability to read non verbal cues are what tell ASD children from children with language issues.

Get help for your child, but be skeptical of an ASD diagnosis at that age.

I do not agree with that, but I would say ASD diagnoses before 24 months of age tend to be premature. I have 3 kids on the spectrum (I posted in the other thread about the signs), with my youngest being diagnosed at 26 months. The signs became more and more apparent between 18-24 months, but she would not have gotten the label at 18 months old. The increase in language and the (slight) increase in social demands was what truly brought it out. Although she is high-functioning (she is verbal), she has always been very reserved outside of her familiar environment, and I frankly hoped she would just be "painfully shy" (Something that we would have addressed as well but that wouldn't have required the same amount of intervention as maturing can help with that), but I had a gut feeling that she, too, was on the spectrum.

Both of my older children had neuropsychological evaluations done last year to ensure that the diagnosis is indeed still accurate, and it is. But they have definitely made HUGE progress thanks to EI.

OP, please do not let the label defeat you. I would seek out EI services and continue educating myself on spectrum disorders, but in the end it is all about treating the symptoms, just like a PP stated.

Thank you. I still cling to the hope that he was misdiagnosed or he’ll lose the symptoms and the diagnosis down the line. But I can also see why he was Dx. Although DS is social, he doesn’t engage us in play, nor does he pay attention to us when he’s hyperfocused on an activity/ toy. Although he can and does play with toys as they’re intended, he seems to default often to restrictive/ repetitive play (spin wheels) and becomes distracted by the sensory aspect of a toy. He can say/repeat many words now (more than 50) but doesn’t get the meaning of most words; we’re sure he understands only 5 words (per ST, kids normally acquire receptive language skills first). He also doesn’t seem to understand simple 1-step commands without gestures (like bring me the book, go to dad). The specialist said one of the main differences between ASD and a speech disorder is non-verbal communication. Kids with speech disorders overcompensate by using gestures and other non-verbal communication; ASD kids do not.

[Anonymous]

A diagnosis isn't destiny, but it will help you determine what therapies your kid needs and hopefully get services and insurance coverage for services.

Bravo for you for pursing this. I wish every parent with an SN kid was as thorough as you.

[Anonymous]

OP I agree with all if the prior posters that you are doing a wonderful job and early intervention services at this age can make a huge difference in outcomes. As the Mom of a
child with SN who has been getting services since she was a 6 months old, two pieces of advice to consider: if at any point you think the dx is not quite right, trust your gut. Turns out my daughter has a rare genetic disorder that looks like other things, but we kept looking (and got a definitive genetic test); second, always consider asking for more services if you think your child will benefit - the squeaky wheel and all that...our county ended up covering a great menu of services, but only because we pushed them (cooperatively and collaboratively). Best of luck to you and your family!

[Anonymous]

You are putting 18 month guidelines on him. Adjusted age he is only 14 mos. Relax! I would get a hearing test but nothing more