Home > Science > How the Autism Treatment Network Helped My Son

How the Autism Treatment Network Helped My Son

This is a guest post by Judith Ursitti. Judith is Regional Director of State Advocacy Relations at Autism Speaks and has been involved in advocacy since her son Jack’s autism diagnosis almost five years ago.

By now Jack and I had grown accustomed to the routine.

You hear of an excellent doctor. You absolutely must get in to see them. You call to make an appointment. Wait for months and months and months. Finally get there. Sit in the lobby, clipboard on your lap, writing down medical history and group i.d.’s.

Jack screams for a few moments as you wait. People stare. We follow the nurse to the back. Answer questions. Show said doctor that you are a pro at shouldering the reality of it all.

Chin up. Head home.

Empty handed…

Not quite two years ago, Jack and I had another one of what I thought would be one of those appointments. One filled with all the can’ts and doesn’ts..

But this was our first visit to an Autism Treatment Network (ATN) site.

I picked Jack up early from school that day and we made the appointment on time. We sat in the lobby of the LADDERS Clinic with the clipboard. Jack screamed for a few minutes and then bounced up on down on the chair by the window.

And then the nurse led us back.

And we met Dr. Margaret Bauman.

And Dr. B was enamored.. “This guy is different!” she declared.

She drilled me with questions, which I answered rather typically I thought. But Jack’s behavior set the tone. He loved Dr. B. He flirted with Dr. B.

We spent well over hour with Dr. B. She didn’t just focus on his deficits.  True, he was nonverbal.  True, he wasn’t pointing yet.

“His social referencing… it’s beautiful!” she declared.

She prodded him patiently from head to toe.  Took notes.  Contemplated what might be going on with him.  Why he wasn’t talking to us.  Why his autism remained so severe.

And then she gave me a plan.  (I’ve learned since then, that’s what they do at an ATN site.  They don’t just think about the brain. They think about the whole body.)

Dr. B. ordered blood work for the routine genetic testing.  But Dr. B also wanted to make sure Jack wasn’t having G.I. issues, so she referred us to the ATN gastroenterologist.  Allergies can really be an issue for kids with ASD, so she referred us to their allergist.  We discussed sensory issues.  Since he was nonverbal, we talked about different types of augmentative communication devices.  She talked to me about Jack’s occasional sleep issues and we devised a plan to address them.

I must confess that at that very moment, as we worked on Jack’s treatment plan, I allowed it to creep in. That provocative, luxurious sensation called

Hope.

I’ve always felt so connected to Jack. Engaged. Sometimes it’s hard to for others to see, but there is a sparkle there.

Normally when Jack is being evaluated or examined, we only hear words like “challenged” or “severe.”

But Dr. B didn’t use those words. To the contrary, she recognized the sparkle right away.

As I pushed the glass door open and we walked out into the parking lot, a fistful of lab-slips in-hand, I felt a new spring in my step.

Careful, I thought to myself … Remember, the Dr. B really doesn’t have any answers.

I elected to savor the moment.

Jack smiled and jumped into a puddle, giggling as we headed to the car.

Two years later, I’m happy to report that Jack remains a patient at LADDERS.  He started talking to us about six months ago.  His favorite phrase at the moment: “No way…”

The ATN (an initiative of Autism Speaks) is the nation’s first network of hospitals and physicians dedicated to developing a model of comprehensive medical care for children and adolescents with autism. The ATN offers families care from doctors highly experienced in helping individuals with autism and providing treatment for associated conditions such as gastrointestinal and sleep disorders. ATN doctors are dedicated to finding better ways to manage the health of children with autism and sharing their increasing knowledge across the wider medical community. In particular, the ATN is dedicated to developing better ways to identify, manage and treat the physical health conditions of children with autism. And as treatments for these conditions become better defined and recognized, it is the aim of the ATN to see insurers routinely recognize the autism diagnosis and cover physical health treatment.

  1. Ali Hoffman
    May 10, 2010 at 12:23 pm

    That is terrific for both you and Jack! I love “no way” it is a favorite of my 6 year old son who has ASD.

    Thanks for sharing!

  2. Emily Neal
    May 10, 2010 at 12:33 pm

    How old was your son when became verbal?

    • autismspeaks
      May 10, 2010 at 1:12 pm

      Jack became verbal at age 6.

      • Emily Neal
        May 10, 2010 at 3:49 pm

        Can you tell what happen that helped him become verbal. I have a seven year old who is nonverbal and she really wants to talk. I have seen thousands of doctors and none seem to be able to help. I was just wondering if you know what helped him make the connections.

  3. May 10, 2010 at 1:19 pm

    love this, love you, love him, love that you always saw (and always will see) the sparkle. yes.

  4. Katie Wright
    May 10, 2010 at 1:47 pm

    Dr. Bauman is indeed a very kind and caring doctor. She sees the whole child not just the disease.

    However, she was unable to treat and appropriately recognize my son’s GI disease. I wish that I had insisted he be scoped before we tried heavy duty pharmaceuticals. It would have saved my son a lot of pain.

    If you feel like your doctor is missing something talk to parents of similar kids, get other referrals, keep going until the issue is addressed.

  5. Debbie Provost
    May 10, 2010 at 2:02 pm

    How wonderful — how I wish we had the program here in Upstate New York. We have nothing even close to that.

  6. sandi
    May 10, 2010 at 3:15 pm

    Is this Margaret Bauman at the Boston location, and is she the former doc from CHOP in Philadelphia?…I live in Moorestown,NJ and am interested in connecting with her and this progam.

  7. May 10, 2010 at 4:31 pm

    Debbie, try the Kirch Developemental Center at Strong Memorial, Rochester NY.

  8. Judith Ursitti
    May 10, 2010 at 5:23 pm

    @Sandi, Dr. Bauman is the founder of the LADDERS clinic in Boston.

    You can learn about ATN locations around the country at http://www.autismspeaks.org/science/programs/atn/index.php. (You might consider Columbia in NY since you’re in New Jersey.)

    @Laurie, Thanks for sharing the information about Rochester ATN site!

  9. Rosalyn
    May 10, 2010 at 6:13 pm

    This was awesome. I am glad for you and your family. Only the best of wishes.

  10. Judith Ursitti
    May 10, 2010 at 7:12 pm

    Emily Neal :Can you tell what happen that helped him become verbal. I have a seven year old who is nonverbal and she really wants to talk. I have seen thousands of doctors and none seem to be able to help. I was just wondering if you know what helped him make the connections.

    In Jack’s case, 1:1 ABA therapy and speech therapy addressing his apraxia have been key. Dr. Bauman also suspected that Jack may have an underlying mitochondrial disorder and we have been trying some experimental treatments under her supervision. (We do not have an official diagnosis on the mito.) I hope this is helpful.

  11. Loch
    May 11, 2010 at 9:38 am

    Dr. B doesn’t take insurance so most people can’t see her, including us.

  12. Judith Ursitti
    May 11, 2010 at 10:36 am

    Insurance coverage remains a huge challenge.

    We are working on a bill in Massachusetts that will require insurers to cover treatments like those provided by Dr. B. You can learn more at http://autismvotes.org/massachusetts. If you live in a different state and want to learn about efforts where you live, please visit http://autismvotes.org/stateinitiatives.

  13. Tiffany
    May 11, 2010 at 12:34 pm

    my son was non-verbal until he was 4 in a half he is now turning 7 this month good talking and he use to have issues sleeping, we did sleep studys and MRI’s,EEG’s…nothing just some stuff in the middle of the night of the right hemispher of his brain 19 electron thingys went off or something like that something was goin on but not enough i guess for them to worrie about! But his sleeping is doin better,he wets the bed so he has to wear pullups..but we have had issues of him vomitting out of the blue with no fever or he will vomitt and be fine after it..does anyone else have this probems? But remember everyone there is HOPE! Just remember they r a gift from God like the rest of the children out there!

  14. Katie Wright
    May 11, 2010 at 12:58 pm

    Emily, I know what frustration you must be enduring. Too many parents do every last thing they are told to do and still minimal progress. Definitely continue ABA speech and OT but Bauman is unlikely to be able to help with problems that are more complex.

    Emily where do you live?

    • Dawn
      February 24, 2012 at 10:28 am

      Agreed. Dr. Bauman will not help with the more complex underlying problems Emily. Please search in your town or city for a good DAN! doc as others have suggested.

  15. Sarah
    May 11, 2010 at 7:43 pm

    The ATN would not have been have started without the Cure Autism Now folks and Dr. Bauman original steerage – of course, now accelerated by our wonderful Autism Speaks.

    With the ATN – the 100% genetic/pharma types can finally go away (or at least start) – of course, I live in the epicentre of 100% genetic/pharma land – and I mean the epicentre. But, I LOVE to talk to the young doctors in our family practice associated with the med-school (husband is a non-asd-related-in-any-way-prof-research-scientist and loves “teaching” at all times – why we’re there – now I ADORE “teaching”). So these, young guns think that ASD is 100% genetic/DSM-IV criteria disease and it has nothing to do with the immune system – and OFF I GO re: the ATN/MIND Institute/etc. (we have one about an hour and a half away). On an aside, we can’t get to the ATN (it is not our local hospital and there is no natural referral there).

    And, I heard Dr. Bauman speak many, many moons ago (while on the queue for THE gastro) at a conference. It was her insight that turned us away from the yahoo-groups-wave (which I was addicted to) – and on to the mito/FOD world where my child always belonged (though I did pick up quite a bit in the yahoo-group world which they have no clue about in the FOD world, e.g., Tylenol – thumbs down, organic & probiotics – thumbs up, etc).

    REGARDLESS, I LOVE THE ATN!

    I WORSHIP DR. BAUMAN!

  16. May 14, 2010 at 8:14 pm

    Quite informative! We tried years ago to see Dr. Tim Buie (the gastro at Ladders) and at the time there was a 18 month wait. We couldn’t wait so we saw one of his colleagues which got us on the road to some testing. Very interested in Dr. Margaret B’s suspicion of a mitochondrial disorder and what procedures she may have used. We’re seeing our pediatric neurologist next month and good info to share, experimental or not…Thanks Judith! Your boy is adoreable! ~ ANNE

  17. Linda C
    May 15, 2010 at 10:10 pm

    My almost 2 year old grandson shows signs–not talking, not sociable, etc etc. My daughter just gave birth to her second son–she is devastated and is trying so hard, almost like “please say it isn’t so” She lives in the Reno area–what resources are here for her? I read everything you have to say.

  18. Judith Ursitti
    May 18, 2010 at 9:10 am

    Linda,

    You and your daughter are not alone… Please (either you or daughter) consider doing a couple of things:

    – Visit http://www.autismspeaks.org/community/family_services/index.php and review the resources available.

    – Call our Autism Response Team at 1(888) AUTISM2. The phone line is staffed with warm, caring support who will help your daughter.

    Thanks for taking time to take action for your family.

  19. JC
    January 30, 2011 at 11:36 am

    Thank you Katie Wright for your insight. Judy Ursitti is nothing but a mouthpiece for Autism Speaks who believes in nothing but straight ABA it seems. After meeting her son I would like to point out to her that biomed may help him more. I know I want much more for my child.

  20. Julie
    March 6, 2011 at 8:38 am

    Dr. Bauman is wonderful but she is not a DAN! doctor. She will not get into the extensive testing and protocol required for these kids. If you think your son is suddenly going to improve with this minor intervention don’t be fooled. Find a good DAN.

    I also have to LOL at you trying to mislead people that your son is suddenly verbal as if he is talking up a storm. A few words that we can barely understand is not considered verbal. Quit misleading parents.

  21. Wendy
    April 12, 2011 at 1:34 pm

    Until you treat the underlying biomedical issues with most autistic children all the ABA in the world will yield minimal results. I talk to parents daily who are convinced of such low expectations and are actually discouraged to look into special diets and other treatments by their ABA providers. My recommendations are to talk to parents of recovered children and not to parents whose children have made little to no progress and who are happy with little results.

  22. mominmass
    May 5, 2011 at 12:18 pm

    I suggest parents join and read Commonbonds parent message board to read quite a few testimonials of parents who have had bad experiences with Ladders. Get both sides of the story. I honestly feel the parent writing this article is a media hound whose opinion I would not trust.

  23. Sandy P.
    October 2, 2011 at 9:05 pm

    Dr. Bauman is not a DAN! doctor. I have seen other children try these mito treatments under Dr. Bauman and have gained little to no results. Parents, go to a DAN! doctor for biomedical treatments, not a Neurologist.

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