Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP here

We are in DC. The dr recommended 20 hrs a week of ABA but we don’t have the full report yet. Our biggest concern is speech. We see a lot of attention issues in non-preferred tasks. But don’t have big behavior concerns. We really believe most everything stems from communication. He was also diagnosed with MERLD. At this point that is our biggest concern. Any recommendations or just things to keep an eye on are greatly appreciated.

To the people who have responded: Thanks so much. It seems so overwhelming and lonely but you all have helped calm me down a bit.

How old is your child? I can tell you of many, many MERLD parents who had their child diagnosed with autism, only to find out it wasn't autism after all. The younger your child is the more likely this is to be the case.

ABA is discrete trial training. It teaches skills, but DO NOT USE IT FOR SPEECH! It teaches a scripted, stilted speech and does not typically lead to natural conversation. If you don't have big behavior issues you could likely use your time better.

What is your child's receptive language like? This will affect everything, including behavior, ability to connect socially, to attend in the classroom, etc.

He’s 4. He is very compliant and wants to follow directions. He has lack of focus/attention issues when he isn’t interested. He has all of his pre-acamdic skills but won’t talk to his teacher or many people at school. Expressively he is about 2 years behind. Receptively is is about 2.5ish years behind. We really feel like he needs to be around all the other 4 year olds in his PreK class. But the school does not agree

MERLD mom here with a teen. You are on the mark. You want your child in a language rich environment. Schools want to do what's easiest for them. I fought tooth and nail to keep my son included in gen ed. School finally admitted at the end of elementary that I was right to do so. They said he couldn't learn; he took his first college visit last month.

I highly suggest a phone consult with Mary Camarata.

Anonymous wrote:

Anonymous wrote:OP here

We are in DC. The dr recommended 20 hrs a week of ABA but we don’t have the full report yet. Our biggest concern is speech. We see a lot of attention issues in non-preferred tasks. But don’t have big behavior concerns. We really believe most everything stems from communication. He was also diagnosed with MERLD. At this point that is our biggest concern. Any recommendations or just things to keep an eye on are greatly appreciated.

To the people who have responded: Thanks so much. It seems so overwhelming and lonely but you all have helped calm me down a bit.

How old is your child? I can tell you of many, many MERLD parents who had their child diagnosed with autism, only to find out it wasn't autism after all. The younger your child is the more likely this is to be the case.

ABA is discrete trial training. It teaches skills, but DO NOT USE IT FOR SPEECH! It teaches a scripted, stilted speech and does not typically lead to natural conversation. If you don't have big behavior issues you could likely use your time better.

What is your child's receptive language like? This will affect everything, including behavior, ability to connect socially, to attend in the classroom, etc.

He’s 4. He is very compliant and wants to follow directions. He has lack of focus/attention issues when he isn’t interested. He has all of his pre-acamdic skills but won’t talk to his teacher or many people at school. Expressively he is about 2 years behind. Receptively is is about 2.5ish years behind. We really feel like he needs to be around all the other 4 year olds in his PreK class. But the school does not agree

Anonymous wrote:OP here

We are in DC. The dr recommended 20 hrs a week of ABA but we don’t have the full report yet. Our biggest concern is speech. We see a lot of attention issues in non-preferred tasks. But don’t have big behavior concerns. We really believe most everything stems from communication. He was also diagnosed with MERLD. At this point that is our biggest concern. Any recommendations or just things to keep an eye on are greatly appreciated.

To the people who have responded: Thanks so much. It seems so overwhelming and lonely but you all have helped calm me down a bit.

How old is your child? I can tell you of many, many MERLD parents who had their child diagnosed with autism, only to find out it wasn't autism after all. The younger your child is the more likely this is to be the case.

ABA is discrete trial training. It teaches skills, but DO NOT USE IT FOR SPEECH! It teaches a scripted, stilted speech and does not typically lead to natural conversation. If you don't have big behavior issues you could likely use your time better.

What is your child's receptive language like? This will affect everything, including behavior, ability to connect socially, to attend in the classroom, etc.

Anonymous wrote:OP here

We are in DC. The dr recommended 20 hrs a week of ABA but we don’t have the full report yet. Our biggest concern is speech. We see a lot of attention issues in non-preferred tasks. But don’t have big behavior concerns. We really believe most everything stems from communication. He was also diagnosed with MERLD. At this point that is our biggest concern. Any recommendations or just things to keep an eye on are greatly appreciated.

To the people who have responded: Thanks so much. It seems so overwhelming and lonely but you all have helped calm me down a bit.

Aba will help with the non preferred tasks.

Address speech and behavior in tandem.

I’m the PP with the teenager. When my son was small and speech delayed, he really liked certain DVD’s recommended by one of his teachers. I think they were called Teach to Talk. My son had trouble with question words - who, what, why, where, etc. - and I really think watching the kids in the videos helped him understand and express himself better.

I’m not sure if the DVD’s are even available now, but you might check with your speech therapist or local library to see if copies are available.

I agree with one of the PPs that often you just need to try different things to see what works best for your child.

Oh I forgot -- Ivymount (in Rockville) has a really great looking ABA based preschool program called the Early Childhood Clinic. They have spots available for kids around 3. I wish it had been around when my son was 2/3. Insurance often pays for some/most of it. Call them and see if your son is a good fit:
http://ivymountoutreach.ss11.sharpschool.com/what_s_new/ivymount_early_childhood_clinic

In DC, call Strong Start (if you aren't involved with them already). https://osse.dc.gov/service/strong-start-dc-early-intervention-program-dc-eip They will evaluate your child and can hook you up with free early intervention therapies (speech, OT, PT, ABA) if your child qualifies. At the same time, you can check your insurance to see if it covers ABA therapy, and if so, start calling in-network ABA providers. Most are at capacity and will offer to put you on their waitlist.

Floortime therapy has been helpful for my son, but their office is in Bethesda (you have to come to them, unlike most ABA providers, who can come to your child at home or daycare). Also, they don't take insurance. If you have out-of-network benefits in your insurance, you can pay for Floortime OT or speech therapy out of pocket and submit the receipts to your insurer for partial reimbursement.

When my son was diagnosed at age 3, the doctor said to try everything I could and see what worked. We only found 2 ABA places that had openings and were covered by our insurance: BASICS ABA and Little Leaves Little Buds ABA preschool. Neither was a good fit for my son, but you might want to contact both and discuss your child's needs with them. If their approach feels OK to you and insurance will cover it, I'd suggest you dive in with ABA and see how your son responds to 20 hours a week. These preschool years are a good time to try intensive ABA or other therapies, because they are most effective when started early in life, and you don't have to worry about working around a school schedule like you do with older kids.

If your child is already 3 or 4, there are more options through private special needs preschools and DCPS preschool placement through the Early Stages office. I won't get into that here since your child might not be old enough yet, but post again if you want info on that.

OP here

We are in DC. The dr recommended 20 hrs a week of ABA but we don’t have the full report yet. Our biggest concern is speech. We see a lot of attention issues in non-preferred tasks. But don’t have big behavior concerns. We really believe most everything stems from communication. He was also diagnosed with MERLD. At this point that is our biggest concern. Any recommendations or just things to keep an eye on are greatly appreciated.

To the people who have responded: Thanks so much. It seems so overwhelming and lonely but you all have helped calm me down a bit.

Hang in there, OP and don’t panic. An autism diagnosis, although scary, is not the end of the world. It sounds like you’re doing the right things. Young minds are “plastic” and a lot of progress can be made as kids mature. If your child is young and you’re in Fairfax County, I recommend that you contact Child Find to get a spot in a Preschool Autism Class or a non-cat class. Some folks combine that with another preschool so the child has exposure to typically developing peers.

As your child grows, use every opportunity to get your child out into the community and around other people as much as possible. The natural instinct for parents of a child who may have challenging behavior and poor social skills is to limit social interactions, but you need to do the opposite even if it’s uncomfortable. Scouts, sports, dance, music - all are good ways to help your child engage with the world.

Good luck. I have a teenager who was diagnosed at 2, and he has come a long way since those early days. Don’t lose hope.

This is a tough place to be (and we have all been there).

Did the developmental pediatrician/psychologist who gave you the diagnosis recommend any therapies? You could start with what was recommended and see how that goes. If you post your child's age and what jurisdiction you are in (DC or county if MD or VA) folks can chime in with more therapist/school recommendations.

If you are interested in biomedical treatments and saved your child’s cord blood, consider enrolling in the expanded access protocol at Duke University Hospital. Phase 2 results are due to be published soon.

Anonymous wrote:DC just diagnosed with autism we are in DC area. We already have private speech. But I don’t know what to do next. We have all these recommendations but I’m so lost. How do we figure out if we really need aba for 20 hrs a week or even where to go for that. Any help would be greatly appreciated I’m just lost in the ocean of what to do. Or even what I should be doing first. Thanks

My suggestion would be the following, but you’ll receive others. Consider the various opinions.

1. Decide whether you’ll use Developmental (e.g., Floortime) or Behavioral therapy (e.g., ABA). If the latter, decide whether to use a more “naturalistic” approach (e.g., ESDM or PRT). Check your insurance coverage. Some cover ABA and some don’t.

2. Continue w speech therapy.

3. Get an OT evaluation, including for sensory processing disorder.

4. Join a parent group. If you’re in NOVA, try POAC-NOVA.

5. Get an IEP evaluation if your child is school-aged and will be attending public school. If interested in private school then look at Auburn, Maddux, etc., to assess the fit. If not school aged, then find an inclusive preschool, but start soon because there aren’t that many good ones and the demand for them is high.

Take a deep breath. This is a journey, so you’ll need stamina and support from family and friends.

Anonymous wrote:DC just diagnosed with autism we are in DC area. We already have private speech. But I don’t know what to do next. We have all these recommendations but I’m so lost. How do we figure out if we really need aba for 20 hrs a week or even where to go for that. Any help would be greatly appreciated I’m just lost in the ocean of what to do. Or even what I should be doing first. Thanks

You did the right things by connecting your child to speech and other services when they had a delay and seeking out a diagnosis.

You’re doing the right things for now.

It's overwhelming!

How old is your child and what do you see as his / her main needs?

Family therapy is good.

DC just diagnosed with autism we are in DC area. We already have private speech. But I don’t know what to do next. We have all these recommendations but I’m so lost. How do we figure out if we really need aba for 20 hrs a week or even where to go for that. Any help would be greatly appreciated I’m just lost in the ocean of what to do. Or even what I should be doing first. Thanks