This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Saturday, November 22, 2014

Medical Comorbidities in Autism Spectrum Disorder

This is an interview with Dr Margaret Bauman MD, conducted by Marvin Natowicz MD, a clinical geneticist at The Cleveland Clinic.  Dr Bauman has spent most of her career associated with Harvard Medical School and Massachusetts General Hospital,  and who has more recently been affiliated with the Boston University School of Medicine.  She is an accomplished researcher as well as clinician in the field of autism.  This webinar is presented by The Cleveland Clinic Center for Continuing Education.

Why is this an important topic?

The importance is that if people don't feel well, they won't do well.  Being able to diagnose and treat these comorbidities helps people to function better on a day to day basis.  They will also have better developmental outcomes.  These comorbidities have been largely ignored in the past, but if we look for them, they may help us identify subgroups of people on the spectrum.  Medicine has been looking at autism as "one thing", but maybe there are many ways to develop autism, and maybe not everyone has the same needs for treatment?  Identifying comorbidities may help us identify the underlying neurophysiology of autism, which may help us identify causes as well as appropriate treatment.

What are some of the comorbidities that affect the GI tract?  Dr Bauman clarifies that she is a neurologist.  She says honestly, the GI complications can be almost anything.  Reflux is common, but they also see esophagitis, gastritis, colitis, ulcers, Crohn's Disease, Celiac Disease, Eosinophilic Esophagitis, almost any inflammatory bowel disease.  These children tend not to present with the symptoms that the average PCP or GI will recognize.  Many people with autism are nonverbal or barely verbal, so may not be able to express the pain and discomfort, and the sensory processing issues can make it hard for them to identify the problem.  Many of these kids will express their discomfort through behaviors.  GI disorders are so common in this population that they need to be ruled out before the disruptive or odd behaviors are written off as part of the autism, or due to anxiety etc.  

The interviewer makes a point to emphasize that one important aspect of this is that these comorbid disorders may be what is causing the symptoms and behaviors that are the features of autism.  In other words, some or all of the autism itself may be the result of these disorders, and may be treatable.  Dr Bauman says that the reason that so many of these medical problems among people with autism have been missed for so many years is because it was just assumed that they were just part of the autism.  She also makes the point that some of these medical issues can be life-threatening.

How about other medical concerns, such as dental concerns?  Again, she says it could be almost anything...that people with autism can get anything that anyone else can.  As far as dental pain, many of the kids have poor diets, sensory problems that limit dental care, and anxiety that makes going to the dentist a challenge.  Earaches are another common problem that can be expressed as aggression, self-injurious behavior, or behavior problems.  Same with urinary tract infections, allergies, kids with enlarged tonsils and adenoids who aren't sleeping well.  She points out that all of this is just as true for the adults with autism, but there is much less awareness among medical service providers for adults.

Around the 17 minute mark she discusses ways that health care providers can make the encounter more successful.  One example is showing the person what the doctor is going to do before they do it.  Another example is having a series of small visits to help the person adapt to a setting, such as the dental office.

Why is the multi disciplinary approach important in medical for people with autism?  This allows specialists to get input from each other, it facilitates communication between the various people on the person's medical team.  Also, each person learns from each other.  It is much easier for the patients to  get their various needs met in one place, rather than having to go all over the place.  It also allows each service to be informed by the others...for example, when the person comes in for speech therapy, the speech therapist can incorporate input from the Occupational Therapist about the person;s needs, which makes therapy much more efficient.  

Additional medical problems that Dr Bauman finds significant include sleep disorders, hormonal problems (especially in girls in regards to menstruation, and she says that in many of the girls once their estrogen and progesterone are balanced, many of the problem behaviors go away), urinary problem sand incontinence (she says that many of the kids she has seen with this have been found to have spastic bladders, even though the problem was assumed to be behavioral for many).  There are also many metabolic disorders, especially the mitochondrial disorders, that are treatable.  PANDAS is another concern that can be treated.  Also Lyme Disease.  Her most important point is that these kids will not present the way that medical professions are looking for.  Behaviors are the primary way that medical comorbidities are expressed.