suspect PPD/ASD... next steps?
Hi,
Without getting into too many specifics, I'm becoming more and more concerned with my 19 month old's development, specifically her expressive/receptive communication skills... she's been in EI for almost 6 months for this delay, and while she's made some minor improvements, she's still way behind, and other things are beginning to really concern me too (not responding when I call her, zoning out every now and then, etc.) I've mentioned my concerns to my Pedi's office in the past, and they've taken a "lets' watch and see" approach thus far. In their defense, I never argued with them, but at her next visit next month, I'm not comfortable with that as an answer. But what should I ask for? I'm soooo clueless about all this, and I don't want to jump the gun and diagnose my baby before the professionals even have a chance to see her, but I need the "next step" to occur... what's the best next step? Moms of ASD/PPD babies, what was the most effective course of action in getting your child diagnosed as promptly as possible? I know early diagnosis can make such a difference with these disorders, so getting the ball rolling is really important to me.
TIA!!
Jana
A ~ 2.7.06
S ~ 9.2.07
Re: suspect PPD/ASD... next steps?
First - your worries are valid. I'm not saying that I think your DD has PDD - I'm just saying that if you're worried, you're worried. You should take the next step REGARDLESS what your pedi says. He/She doesn't have to have any part in an evaluation.
Everyone I hear chime in about their young child w/PDD says that their Pediatrician had no concerns or either said 'wait and see'. Same story for us.
First, visit: https://www.autismspeaks.org/community/fsdb/search.php?chgst=true
Look for your local EI office. Now, you did say that you are already in EI for receptive/expressive... do you have a program coordinator? is the person who works with your child concerned too? We had our evaluation through EI at 23 months for concerns of high functioning autism. Did they do a full evaluation 6 months ago or was it only speech related? They should do a hearing/vision screening as well.
Next, you may want to visit: https://www.earlyinterventionsupport.com/whatis.aspx
I wish I had this link a long time ago. It really helps understand and put pieces together of what a child could need/get through EI, plus shows red flags and developmental appropriate skills.
And..... my blog is our own journey. It might be helpful...might not...who knows. If you're up for it, look at my first post (July 2008). https://notjustlabeled.blogspot.com/
If you don't have someone you trust to ask questions, listen, help you sort through whatever is going on.... email me. I'm just a mom with a DS 32 months old diagnosed with autism.... but I wish I had more people to bounce off when he was 18 months old & I was concerned. scott and briana at hotmail dot com
Best wishes! I pray your mind will not be too consumed - you will find the right resources.
BTW - that picture with the pigtails really made my day - your girls are ADORABLE!!
I forgot to include:
https://www.autismspeaks.org/community/family_services/100_day_kit.php
It is the 'First 100 days after diagnosis' kit from the Autism Society... but there is no reason you can't look through it ahead of time. It might help you sort through some of your thoughts. It is SO easy to get caught up roaming the internet for answers - but for me - this resource REALLY put all those pieces together.
What's an NP? Whatever it is, you may want to get a new one. I never heard of not being able to administer a hearing test on infants and toddlers. It's even recommended that audiologic screenings be performed to ensure that the little ones aren't losing their hearing. Not very month, but periodically. Please ask your doctor. Late hearing loss detection can mean late language development.
I didn't mean for that to sound like a PSA.
NP= nurse practicioner... we had to see her for Sylvie's 15 month check-up because her reg. doc was unavailable.
Thank you so much for your insights, ladies... as I imagine you all know, this is a very intimidating and overwhelming road I'm embarking on, but I hope with the right information and support, I can navigate it well for my daughter.
Thanks again... I'll be sure to check out those resources!
I agree with Autie about the Pedi & hearing loss. I wasn't thinking what she was thinking, but I would certainly make sure that is looked at.
We went the EI route - so my recommendation of that was due to what we did. I have nothing against the other options - so whatever you find that's best right now will be great.
Also, we ended up at the doc thinking DS had an absent seziure when he was a baby. I don't remember when it was - but everyone looked at me like I was a NUTCASE. I guess now... looking back... I might have my answer as to what that was. I haven't thought about that in a LONG time.
My ds hearing was tested at 20 months old, so it can be done. Do you have any children's hospitals you could take him to? It's best to get that ruled out first.
Your child needs to be seen by a developmental pediatrician and psychologist. We just had my ds evaluated earlier this month through a team of doctors that included a dev ped, psych, slt and a psychologist specializing in social communication. My ds was diagnosed with autism. Ditto pp that said to get it started right away, as there can be lengthy waits to get an appt. Also check with your insurance company as well to see what they do and do not cover, so you are prepared financially. Insurance companies, unfortunately are kinda sketchy about covering things such as this.
It's great that you are wanting to get help and have spotted possibly delays this young. The younger your dc gets help, the better!
I haven't read all of the replies, so sorry if I repeat. You don't NEED a diagnosis quite yet. First, you need a referral for an evaluation by a speech language pathologist and more intensive therapy. Are there any feeding, fine motor, sensory concerns? If so, get the pedi to refer for an OT eval. While you are at it, push for a PT eval if any motor milestones are delayed- even slightly - the more people you can get meeting and evaluating your child, the better, at this point. Right now, you need all of the info you can get so you can begin to sort through it and figure out what is best for your child. A pediatrician should be willing to give a prescription for these evaluations. You can worry about the treatment after you have as much info as possible from these professionals. Are you familiar with various methods of intervention for ASD? DIR/Floortime, ABA, biomedical, sensory integration? Perhaps a "developmental pediatrician" would be the best route. Often pediatricians refer for ST and maybe OT or PT and then stop because honestly, no one really has THE ANSWER and each child responds to different therapies and they are more concerned with physical health. This is not a slam against pediatricians. The other big issue you will find is that medical insurance is not covering many types of intervention for these children, so the information is a little harder to uncover and physicians aren't likely to recommend treatments that are not covered by insurance - doesn't mean they aren't effective. Start researching on the internet so you will begin to KNOW what you don't know and know what questions to ask. Diving into the world of autism/PDD is a scary one with a lot of unknown, but once you begin to educate yourself and become your DC's advocate, which you are CLEARLY doing, you can make great progress. GOOD LUCK!!!
https://www.stanleygreenspan.com/
https://www.defeatautismnow.com/
https://www.autismspeaks.org/
https://www.autism-society.org/site/PageServer
https://www.mayoclinic.com/health/autism/DS00348/DSECTION=tests-and-diagnosis
just trying to give you some places to get some "key words" so you will know where to start, what to look up, etc.
I am a speech therapist and can't stand that the biggest road block for many parents is that they don't know what they don't know. I wish I could help you more. Unfortunately, parents have to be extremely proactive in the world of autism. I know many children who were diagnosed with autism at 2/3 years old and my kindergarten or 1st grade are mainstreamed and have no diagnosis. They have wonderful proactive parents, like you seem to be. Best of luck in this endeavor and don't let your pediatrician tell you to wait. Don't do it!!!! Follow your gut!
yes, an audiologist can certainly accurately assess a childs hearing at that age.