DAN Doc?

hille12

My LO is 2.5 and newly diagnosed. I've been reading a lot about DAN Doctors and on the fence about the whole thing. Would love to hear experiences/opinions. Thanks.

typeset

Not for our family. Not recommended by our team at Children's, either. Further, our contract with the autism school doing his ABA services through EI precluded us from pursuing alternative therapies, even sensory integration or a GFCF diet. 

hille12

Thanks. Being very new to all this, I am extremely overwhelmed by all the info (some of it admittedly online). Being a nurse, my stance is science based. We are doing EI, as well as private OT & ST. And want to begin ABA asap (if we can get our ins to cooperate). My fear is to not have tried something. I may regret not doing, but never regret trying (safety of course number one). Any solid books you guys recommend for a new diagnosed family?

typeset

Recommended to us by the psych/dev pedi at the time of Dx: 

Teresa Cardon's Initiations and Interactions: Early Intervention Techniques for Parents of Children with Autism Spectrum Disorders

Julia Moor's Playing, Laughing and Learning with Children On the Autism Spectrum: A Practical Resource of Play Ideas for Parents and Carers

Sue Schwartz's The New Language of Toys: Teaching Communication Skills to Children with Special Needs [lists recommended toys by age to teach certain skills; information probably available online or through your SLP/OT]

Sally Rogers & Geraldine Dawson's Early Start Denver Model for Young Children with Autism: Promoting Language, Learning, and Engagement

National Research Council's Educating Children with Autism

I've rounded it out with suggestions from auntie about AS/HFA kids (dunno your child's profile) and stuff from Wrightslaw as we made the transition to preschool. Our ABA program gave us Making a Difference: Behavioral Intervention for Autism in parent training.

kcisthebombdotcom

We have not seen a DAN doctor but do utilize alternative treatments alongside more traditional treatments. All but one have been endorsed by our neurodevelopmental pedi/neurologist/pedi so I would start there. There is a definitive link between the gut and brain--treating the gut can help the brain. My first step would be to request food allergy/celiac testing. The reason why celiac is so grossly under diagnosed is because it can present with zero GI symptoms and a symptom of the disease in children is developmental delays. My kiddo has a diagnosed case of celiac and it was a game changer. Within six weeks of going gluten free the kid who spent her days walking around the house mouthing toys was sitting with therapists playing with toys and showing joint attention. She's still delayed so it wasn't a "cure" but treating her gut has made her brain available for learning. I hope that someday celiac testing is a standard practice for kiddos with developmental delays...but I digress.

Another good thing to start is a multivitamin--vitamin deficiencies can definitely contribute to developmental delays. We like this one: https://www.enzymatictherapy.com/Products/Childrens-Health/Multivitamins/03316-Sea-Buddies-Daily-Multiple.aspx

Another thing that had helped is probiotics. It can help heal the gut helping the brain run more optimally, has helped with dds immune system as she was getting sick a lot which came with setbacks, and overall is just something that contributes to overall health. We use kefir which is a drinkable yogurt, contains 12 different strains of probiotics, and is lactose free so easy on the tummy. It's something you can find at any grocery store in the yogurt section.

Something that my neuro recommends (and personally takes himself) is a fish oil supplement. It's something that can help the brain unless your kid eats fish on their own--foods are always a better source of getting nutrients vs supplementing. It's definitely helped DDs nervous system.

mommyof4boys

typeset said:

Not for our family. Not recommended by our team at Children's, either. Further, our contract with the autism school doing his ABA services through EI precluded us from pursuing alternative therapies, even sensory integration or a GFCF diet. 

Sensory intergration isn't an alternative therapy.  It's used with many kids whose sensory needs affect their daily living.  I've got a few like that and ABA suggested the sensory component be pulled in with the one kiddo they worked with during EI.

typeset

mommyof4boys said:

typeset said:

Not for our family. Not recommended by our team at Children's, either. Further, our contract with the autism school doing his ABA services through EI precluded us from pursuing alternative therapies, even sensory integration or a GFCF diet. 

Sensory intergration isn't an alternative therapy.  It's used with many kids whose sensory needs affect their daily living.  I've got a few like that and ABA suggested the sensory component be pulled in with the one kiddo they worked with during EI.

It's considered an alternative therapy by the ABA provider we used, a big-name autism school in the northeast. To say they are anti-SI is an understatement. 

I understand that it works for many families.

kcisthebombdotcom

typeset said:

mommyof4boys said:

typeset said:

Not for our family. Not recommended by our team at Children's, either. Further, our contract with the autism school doing his ABA services through EI precluded us from pursuing alternative therapies, even sensory integration or a GFCF diet. 

Sensory intergration isn't an alternative therapy.  It's used with many kids whose sensory needs affect their daily living.  I've got a few like that and ABA suggested the sensory component be pulled in with the one kiddo they worked with during EI.

It's considered an alternative therapy by the ABA provider we used, a big-name autism school in the northeast. To say they are anti-SI is an understatement. 

I understand that it works for many families.

I'm fascinated they can work with kids without using SI techniques. How do they get kids to sit and attend to hours a day of behavioral therapy without incorporating sensory integration? I know my kiddo couldn't attend to ten minutes of therapy before we started ot--never mind multiple hours a day.

mommyof4boys

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KC_13 said:

typeset said:

mommyof4boys said:

typeset said:

Not for our family. Not recommended by our team at Children's, either. Further, our contract with the autism school doing his ABA services through EI precluded us from pursuing alternative therapies, even sensory integration or a GFCF diet. 

Sensory intergration isn't an alternative therapy.  It's used with many kids whose sensory needs affect their daily living.  I've got a few like that and ABA suggested the sensory component be pulled in with the one kiddo they worked with during EI.

It's considered an alternative therapy by the ABA provider we used, a big-name autism school in the northeast. To say they are anti-SI is an understatement. 

I understand that it works for many families.

I'm fascinated they can work with kids without using SI techniques. How do they get kids to sit and attend to hours a day of behavioral therapy without incorporating sensory integration? I know my kiddo couldn't attend to ten minutes of therapy before we started ot--never mind multiple hours a day.

Chris had to have SI as part of his OT because he wouldn't touch playdough, soap, water, toothpaste, etc.

typeset

KC_13 said:"I'm fascinated they can work with kids without using SI techniques. How do they get kids to sit and attend to hours a day of behavioral therapy without incorporating sensory integration? I know my kiddo couldn't attend to ten minutes of therapy before we started ot--never mind multiple hours a day."

Part of the rationale is that they publish based on the data they collect and they don't want anything else screwing with their numbers. It's not necessarily that other methods can't be effective, but that they haven't yet been proven as effective as ABA. Very serious business for them. Parent training emphasized that ABA is the only research-based "treatment" for autism. Everything else is "therapy." There was a whole PowerPoint slide devoted to that point. Before I get jumped, I do take it with a grain. ABA worked really well for our family, but I know that other people have had and continue to have success with other methods. 

As to getting kids to respond: positive reinforcement. They started with a preference assessment to ascertain his favorite things and used those items as reinforcers to shape behaviors. Attending was one of the first skills they worked on, along with response to name, response to a greeting, and waiting. They taught the kid to wait, for instance, by first having him sit in a ready position. Great! He sat quietly with his hands folded. He was rewarded with some bubbles. Repeat times however many blocks of trials they were running. Then he had to sit for ten seconds. Rewarded with his favorite toy car. Repeat. Then they held off for twenty seconds, etc., eventually building up to two minutes and ramping the rewards as the work increased in difficulty. A lot of it was just waiting him out to catch him in the "right" behavior to encourage him to do it again, although they could also proactively shape behaviors through hand-over-hand teaching and then fading. The instant gratification was eventually moved to a token system. He had to earn five or ten tokens to get his big reward. 

You can see why they require as many hours a week as they do. It can be very slow going. 

If you're picturing dog clicker training, you aren't far off. 

With regard to avoidance--getting him to tolerate the backpack of doom or accept new foods on his plate let alone try them--it worked much the same. First we placed the item on the work table near him. He was rewarded once he calmed down and continued working with it present. With the backpack, he was then made to wear it for ten seconds. Awesome! Earned a token. Then he had to wear it for twenty seconds. And so on. Any time he didn't want to do something, it was guaranteed he was going to have to try it. Didn't want to get his hands messy? They dabbed finger paint on him and redirected him onto a preferred object until he stopped freaking out. Then his hand would be put in the paint. (Maybe some of that ties into sensory integration ... ?) I think they accelerated a lot of the desensitization programming based on my kid's profile. 

Our EI outfit was purely Floortime/SI. I confess our experience there partially tainted our understanding of the other methods. The child dev specialist *walked out of our eval* when we asked about evidence supporting the various approaches. It was like we'd taken a shit in the room. Her parting shot: "ABA therapists will make him touch his nose over and over. He knows where his nose is!" Our point was that he may well know, but damned if he could get over himself long enough to do it when asked. 

typeset

And we've strayed far, far away from DAN. Sorry, OP.

typeset

I'm having massive issues with the quote function. 

That's good, auntie. I hope more studies come about now that the sensory piece has been added to the diagnostic criteria. Then maybe the insurance companies will start picking up the tab.