PDD and RED Flags

[michelle1986]

Hi, Our son just turned 2 in March. He is currently receiving help through the county for an auditory processing disorder. He also has been noted to have red flags for autism. Just got done w/ his kennedy krieger apt where they put him in the one percentile. This is crazy! he is 2 knows all his shapes, colors, numbers and ABC's, in order out of order and upside down. Someone please Help!! Were lost on what step to take next.

[momla]

What kind of eval did he have at Kennedy Krieger? Did he see a developmental pediatrician? Or was it a speech/language eval? What types of red flags for autism do yous see? It is terrific that he knows all that information but, honestly, it doesn't rule out autism. Being able to recite information and communication for social/emotional purposes is different. Did you read through the red flags sticky at the top of the board?

If someone is concerned about a 2 year old with autism, the child needs to ideally have a team evaluation consisting of a developmental pediatrician, a SLP, an OT, and (if necessary) a PT. From there, if the child is diagnosed, your state should provide services until he is 3 and then at 3, you have options of either going through your public school district for free services or going through your insurance (depending on what they cover) or paying out of pocket for private therapy. You have the insurance and paying out of pocket option prior to three also. You will need to educate yourself on some of the most common approaches to autism therapy: ABA (applied behavioral analysis), Floortime, RDI (Relationship Development Intervention) and figure out which one you feel most comfortable with and what your budget and resources allow for. There is no "one size fits all" approach to autism therapy. But, if you live in an area like mine it seems like almost every child with autism gets speech and OT and social skills groups through early intervention and then goes to public school early childhood and on into the public school spEd system. Maybe some outside speech and OT if their insurance covers it. That, however, is not the path we chose to take. But, we have the means for private therapy out of pocket and I'm well aware that is not the norm for people.

I'm happy to help in any way I can.

[michelle1986]

He had the 2 day eval from krieger, it was the developmental pediatrician, a SLP, and an OT. we thought he did very well, then they told us he is functioning at a 23 month level for cognitive thinking and only at a 9 month level for Receptive language and that he is only in the 1%tile. The county said he was functioning at an 15-18month level. Those months are very different from krieger so it left us confused. He is currently getting help through infants/toddlers. The red flags below are the one we noticed:

Communication Concerns

Does not respond to his/her name
Cannot tell me what (s)he wants
Doesn’t follow directions
Appears deaf at times
Seems to hear sometimes but not others

Social Concerns
Doesn’t smile socially
Seems to prefer to play alone
Gets things for himself
Is very independent
Does things “early”
Has poor eye contact
Is in his own world
Tunes us out
Is not interested in other children

Behavioral Concerns
Tantrums
Is hyperactive/uncooperative or oppositional
Gets stuck on things over and over
Has unusual attachments to toys (e.g., always is holding a certain object)
Is oversensitive to certain textures or sounds
Has odd movement patterns

Absolute Indications for immediate further evaluation
No 2-word spontaneous (not just echolalic) phrases by 24 months

[momla]

So, I'm confused. Did he get an autism diagnosis? Are you wanting to know the next step to take toward evals or treatment? I'm happy to help, I just need to clarify. I'm a little hormonal (DFET t/f tomorrow) so forgive me for needing to clarify.

[michelle1986]

The lady told us after two days that he does fall onto the ADOS spectrum but that we would need another apt for them to tell us where on the spectrum. Called for that apt they told us it's a 3-6 month wait.

[michelle1986]

Good luck

[momla]

Okay, so I'd sit and wait for that appointment and in the mean time, I'd get him as much therapy as possible lined up. Early intervention is KEY for success. Have you checked your insurance to see if they will cover ABA (applied behavioral analysis) therapy? That is what I would do first thing. Getting speech therapy is good, but in my opinion, ABA is critical. Other parents wouldn't feel the same way about ABA necessarily but our developmental ped made no bones about it. "Get him ABA--25 hrs a week minimum" were her words. In case you are not familiar with ABA let me describe it. It is intensive (25-40 hrs a week usually to be optimal) of 1:1 teaching. Each goal is broken down into baby steps to lead the child toward success. There is a very methodical way of approaching ABA and the types of prompting and reinforcement. Unfortunately, there is good quality ABA which does WONDERS and then there is not so hot ABA which doesn't work as well if at all. It is hard to distinguish. The ABA consultant will kind of lead your therapy team and help you navigate your way through the maze of options available for autism therapy. There is a LOT out there that people claim treats autism. Unfortunately, a lot of it isn't backed up by science and a lot of it is hocus pocus in my opinion. Some of it is questionable, some of it is maybe, some of it likely helps. ABA is the gold standard because it has been studied over and over again and proven to show results and, sometimes, remediation of symptoms. My son, for example, started therapy at 16 mos (speech and OT) and then started ABA at 2y4m right after his diagnosis. He is 10 now and there is no way he would qualify for a diagnosis. He was moderate on the spectrum at diagnosis. After 1 year of ABA we took him back to the developmental ped for a follow up and SHE cried saying that he should be the poster child for early intervention. For ABA first we used a local consultant (who is now my best friend) and then we moved to the Center for Autism and Related Disorders (CARD). I looked online and there are a few CARD sites in the northeast but I'm not sure if any are close to you. However, CARD consultants are used to traveling. I would check with your insurance to see if they will cover ABA and how much. Then, call CARD. Our insurance didn't cover ABA. We paid out of pocket for it from the time he turned 3 until he finished therapy at 9 1/2. Expensive? Yes!! Worth it? Absolutely!!!!! But, I know not everyone can cash flow it. Supplementing ABA with speech and OT is great (and PT if he needs it). When my son was 2, he did about 30 hrs a week of ABA spread out over 7 days a week. He went to an ABA preschool every morning from 8am-12pm and then lunch and nap. Then, a little bit on the weekends. The key to success is for YOU to LEARN everything you can from your ABA therapists and carry over everything into his natural environment the other waking hours of his day. It promotes generalization of his skills. It is a daunting task and one we are not prepared for as mothers but we have no choice other than to become warriors for our children. CARD also has an online option that parents and other therapists can do on their own if they can't afford a full program. While this is not ideal, it is certainly better than nothing. There are training videos and programming available with their distance program. Here is their website: Home - The Center for Autism

That is my 2 cents. I am obviously very passionate about ABA. You will get a million different opinions based on who you talk to. You just need to research your options and figure out what feels good to your heart. The best way to research options in your area are from other parents in autism support groups IRL or online, your developmental ped, other therapists. Just know, that historically speech therapists are pretty anti-ABA saying it isn't "natural." I didn't listen to that. My son had autism. That wasn't typical. I needed to teach him in a non-traditional way how to function so that he can integrate into his typical world (which wasn't going to change for him). It worked. That's all I have to say. He is 10, going to start 4th grade next week. No IEP, no services, nothing. He is age appropriate in all areas. Is he a bit quirky? Yes. But, any more quirky than 1/2 the neighbor's kids? No. He gets straight A's in school all on his own. Has friends. Gets invited to birthday parties, playdates, etc. Had a little "girlfriend" for a while. LOL! Tells me how much he loves me all the time. I'm able to have in depth conversations with him. He is rockin' and rollin'!!