Look Before You Leap…

Thursday morning began with a trip to my son’s pediatrician, Dr. B.  Dr. B is a fine pediatrician for my son’s asthma, for his colds or ear infections but I went to see her for his autism today.  She doesn’t know much about autism.  She freely admits this.  So, it was a really weird appointment.

The whole point of the visit was to find out what her opinions are about the risks of my son participating in hyperbaric oxygen treatment or transcranial magnetic stimulation which I have been blogging about here and here.  In order to get to the main questions however, I had to explain all about his current speech, occupational and behavioral therapies.  I had to tell her how often he goes, where, with whom and I had to explain what ABA does.  Yes, you heard that right.  I was explaining ABA to her.

Have I mentioned that she doesn’t know much about autism?

I knew I was going to have to explain how much time he spends at various therapies he was receiving but I did not think I would have to explain what the therapies did.  Have you ever felt like you are the only one saying anything and the other person doesn’t really get it?  It was one of those times.  I felt I spoke so much that I was sick of my own voice. Dr. B seemed a bit uncomfortable with the discussion outside her realm of expertise.  Eventually, she gave my son a standard examination – an area in which she was confident, right before we left.

When we finally got to the main event, I asked about her familiarity with hyperbaric oxygen treatment (HBOT).  I asked her whether the risks of HBOT were relatively high given my son’s age, size and condition.  Her response was that she had absolutely no concerns about his physical health or well being in connection with participation in HBOT.  As a scientist, she said, the lack of evidence in support of the theory, was a concern that I might be wasting money because it might not help him.  She said she understood that, because there was a possibility that HBOT could lead to an improvement in my son’s condition, I wanted to pursue it.  She said there was nothing wrong with that.  She says she does not discourage approaches to safe, but unproven alternatives.

Because of her lack of expertise in autism, I asked about a developmental pediatrician who was an expert in autism.  She says that type of pediatrician is not familiar to her in California.  Instead, she agreed to refer me to one of the best pediatric neurologists in our region, a Dr. Michael Chez.  Normally, I would not name names here.  But this guy is a big deal in these parts and his name ties in below.  I heard great things about this neurologist today and I am excited to be embarking on this new phase for the little guy.

I must say that it was a bit disconcerting tonight when I checked online for him and found that he is a part of my medical group.  More disconcerting?  My medical group has an entire Neuroscience Institute within which is an Autism Medical Treatment Center of which he is the head -to which I have never previously been referred.

Really?!  I had to schedule my own damn appointment with my “clueless” pediatrician, explain that I’ve been researching all these treatments as a mom from my home and my computer to help my son and she’s known all along that there is an effing Autism Medical Treatment Center that she nor anyone else has bothered to share with me for over a year?  Just a little perturbed about this.  At the same time as I’m excited to finally speak with someone who will give me the best information I can get within my insured medical plan.  Here’s a bit of shameless promotion by my medical group about the doctor to whom I was referred which was posted on their website:

Maybe I should blame myself for not researching my own medical plan.  I would not think that a mom of a fairly newly diagnosed child would have to do research within her own medical plan for this type of specialty.  Silly me, I thought my medical providers within my own medical group or even the numerous people who diagnosed and/or have treated my child to date, might have shared this information with me.  Not until yesterday.

Since they did not, I thought I’d share a little something with all of you.

The first place you might want to look for specialists in autism is within your own medical plan.  Don’t wait for your pediatrician to give you the appropriate referrals or assume no referrals exist if they don’t give them to you.  Ask.  Google.  Research.  The help you are looking for may be in your own backyard.

Now that I know about this whole new resource, I am holding off on alternative treatments.  Instead, we will be going to this center for appropriate, science based testing and treatment.  I’m not saying we won’t still do the HBOT or TMS, but if I do, I will talk to the experts first.  I think this guy will know what I’m talking about.  And from now on, before jumping into alternatives, I’m going to look before I leap…


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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18 Responses to Look Before You Leap…

  1. Ugh. I feel for you here, Karen. We have two BIG hospital systems in Cleveland (The Cleveland Clinic and University Hospitals) — both do some amazing work with autism and related diagnoses, but neither seem to know what the other is doing (either that or neither want their patients to know)!

    The funniest (and most ironic) was getting a pamphlet from the UH Autism Clinic (that I found after going out on my own) that had Cleveland Clinic specialists listed as speakers. They work together, they publish together, but when it comes to letting patients know about complementary services, you are totally on your own!

    • solodialogue says:

      At least I got him the referral! A year later is better than none at all. But still, if I hadn’t made the appointment because I already knew the doc knew so little about autism, I wonder how long it would have taken me to find out. Honestly – ugh is right!

  2. Jessica says:

    Excellent points, Karen. We were lucky to get a pediatrician who was smart enough to give us referrals and also lucky enough to be by a major children’s developmental center. But I really do worry about what happens when things don’t come together just so. It’s so important to know what’s out there and the time when you need it most is the time you know the least about what you’re looking for. You’re a great resource. 😉

    • solodialogue says:

      Thank you Jessica! I’m glad you are getting good referrals and help. You’ve got great early intervention going. Don’t worry too much! (Look who’s talking… ) 😉

  3. Flannery says:

    You are not alone. Not one damn doctor here has ever volunteered any information to me about autism services, support groups, providers…nothing! It’s disgusting. But I’m in Texas, so I guess this is to be expected.

    • solodialogue says:

      I just don’t get it. Why is there this complete lack of sharing information? I get more information here than I do from the medical profession. That is just wrong.

  4. Ugh. Pudding’s first pediatrician knew so little about autism that she sent us away saying that everything was fine. Particularly galling when her awesome Dev. Ped. is part of the same practice.
    I don’t blame doctors for not knowing enough about autism, or missing it in some kids, but I do blame them for not adequately referring patients, and for dismissing parents’ concerns. It happens way too often. We’re also lucky enough to live in an area with great research centres, but that is a geographical lottery too. Not everyone is so fortunate. And then there is the whole question of what insurance will cover.

    • solodialogue says:

      It is a definite imbalance. Some health care providers have a wealth of information but others have nothing. The person I was dealing with who had nothing did not refer me to the specialist! There is some serious communication gap there. If I had not gone, we would have simply plodded along without knowing. It’s unfortunate that it is like this and it really needs to change but when or how. How many families have fallen through the cracks? It just shows how important it is that parents become advocates for their children.

  5. Amanda says:

    Check out this page:

    Parent Ratings of Behavorial Effects of Biomedical Interventions

    27000 parents took part in the study, it’s a pdf download. Very, VERY interesting stuff.

    As for docs, don’t get me started…

    • solodialogue says:

      Thank you Amanda! What an amazing resource that is! I looked at all the results but the HBOT results were of particular interest and very encouraging! Of course those are from a couple years ago but nonetheless good stuff! 🙂

  6. Teresa says:

    Your experience is frustrating but emblematic of the situation for so many. Autism is still not looked at as a medical ailment by many “experts”. In addition, doctors may not be up to date on the latest autism treatment options. Have you looked at UC Davis? They have a big program: http://www.ucdmc.ucdavis.edu/mindinstitute/ . There are also DAN (Defeat Autism Now) doctors in your area: http://www.examiner.com/autism-parenting-in-sacramento/dan-and-f-e-a-t-sacramento (it’s a 2010 article but you should be able to do an updated search. (For other parents, DAN Doctors can be found in most states.) They are not the only experts on autism treatments but are often more aware of the options, new trials, and phony scams. You may find you have to pay for the visit. The doctors we took Matthew to were rarely on our insurance plan. But they may offer you treatment methods you have not heard of. What you did with your ped. is the best…keep talking and asking questions.

    • solodialogue says:

      Thank you so much, Teresa for going through the effort of helping me with finding resources for my son. That is a very sweet and time-consuming thing you have done and it is appreciated. Yes, I am familiar with UC Davis MIND Institute. It was where my son was diagnosed with autism a little over a year ago. It is primarily a research facility and while world renown it is extremely rigid, the waiting list just for a diagnostic appointment is 3-6 months and it does not treat autism. It seeks participants for studies from time to time, but each time I’ve been contacted, for one reason or another, either he or I have been excluded from qualification. It really is an ivory tower for research and is not a treatment issues facility. I have it listed as a resource on my sidebar as well as FEAT which is families for early autism treatment who are really not “in the office” so to speak much at all. We once got flashcards from FEAT for ABA tutors and it took over a week just to get a return phone call. Rather than send us to a physical office, we went to someone’s home to pick them up. Not a real alternative for the types of things I’m looking at here. The DAN doctor sounds interesting but I’m going with Dr. Chez for now given his impeccable credentials. I definitely will keep the DAN doctors as a reference point as this may be something I explore if the results from Dr. Chez are not useful for some reason. Thanks again!

  7. Broot says:

    That’s just plain shocking. [mind boggled]

  8. eof737 says:

    “Now that I know about this whole new resource, I am holding off on alternative treatments. ” Good idea to take that advice… Best to err on the side of caution.
    Have a restful weekend!

  9. Tam says:

    This happens with a lot of other conditions too. I went to doctors for something like 8 years for my rare neuropathy before they bothered to tell me there was an MDA clinic AT THAT HOSPITAL which specialized in disorders like mine.

  10. Deanne says:

    Catching up on your blog 🙂 Excellent news about the referral! I hear your frustration with respect to only finding out about this now… It’s like that with respect to so many things, there’s no ‘one-stop shop’ for ASD services and it takes so much work to find out about all the different places to go, then there’s the duplication of information you have to give everyone…. I sometimes say to people that I feel when the ASD diagnosis arrived, I stopped being a mother and became an administrator. It would be so wonderful to have some help with navigating all this. I do think it’s a good idea (and important) to become involved in your local ASD community so that you can share and obtain information from other parents – we’re often our greatest resource as well as source of support!

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