Where to Start when Autism is Diagnosed

The first challenge that parents encounter when faced with a child who may not be developing in a typical fashion is getting a correct diagnosis. One doctor says “PDD-NOS,” another claims “Just a speech delay and some ADHD,” and yet another specialist suggests “Let’s wait and see.” We are knee-deep into an autism epidemic, Ladies and Germs! If your child produces few words by 15 months (or displays a loss of words), has problems with eye contact or socialization, exhibits repetitive behaviors and has signs of core hypotonia (central weakness), you are dealing with the red flags that signal ASD.

The top Google searches for what to do about your suspicions include an inaccurate (at least, dated) list of signs and symptoms, an accurate reference article by the NIH, a parent guide that offers good advice, a fairly helpful (but less-than-practical) step-by-step guide, a webMD primer, and several columns expressing sympathy and empathy. What they all seem to have in common is the advice that parents need to learn everything they can in order to help their child. While that is an admirable and helpful pursuit, isn’t it more common, when a family member is struck with a complicated medical condition, that a trusted medical professional is pursued in order to assist in the best course of action? Doctors take note – you have been left out of the loop.

Where to start:

1. Forget about all of the other opinions and seek a physician who understands that “high risk” for autism means close observation and initiating therapies to address the developmental condition ASAP. If the child is simply a “late bloomer,” so what? Unfortunately, this is often the most difficult step. Generation Rescue’s website is a good start, and the emerging Medical Academy of Pediatric Special Needs is working on providing significant resources.

2. Parents desire to do everything they can, within reason, to help their child. In an abundance of caution, initiating intervention at the earliest possible age can be therapeutic at best and reassuring at least. ‘Kick-starting’ speech and language and/or assisting developmental milestone acquisition with physical therapy are some great ways to get started. The family will become more comfortable about the diagnosis, understand ‘the journey’ better, and will frequently get to observe some quick improvement.

3. A popular reflex after searching the web is for parents to give the gluten-free/casein-free diet “a try.” Talk About Curing Autism offers a great deal of helpful information on this intervention. While this step may be important, there are some pitfalls that accompany this decision. If a child who is put on a casein-free (milk protein) diet is very sensitive to soy, the diet may not appear to be ‘working’, if there was a change to soy milk. Likewise, if the child is eating lots of peanut butter, for example, and is allergic to it, the diet may not appear to be helping. Finally, if the child has no problem with dairy or wheat, the diet won’t be helpful. Also, dietary intervention sometimes takes time (months) and patience before improvements can be seen in communication or behavior.

4. If you haven’t done step #1 yet, it belongs here: Find a competent autism practitioner who understands and has TREATED autism (not just diagnosed it). If you don’t do this step, you are getting into territory which can result in little improvement, significant regression, or a sense that you are not doing “everything that can be done.” An appropriate medical workup should include a blood count, liver, kidney and thyroid function, nutritional health, and gastrointestinal testing. Blood, urine and stool samples may be required in order to gather such valuable and pertinent information about the patient.

5. Make sure that the child’s overall medical condition is clear. Simply because the child appears healthy, don’t forget that they are relatively non-verbal, resistant to pain and have a narrow range of expressive behaviors. How do we really know if the child is healthy unless appropriate lab work has been collected and reviewed so that your child is in top shape? I had a patient last week who was mildly anemic. Now, it may not seem like much, but, why worry about HBOT (which is an expensive and resource-intensive intervention that brings oxygen to distant tissues), when all a patient may have needed was a bit more iron in their diet? Similarly, gut-related signs and symptoms are rampant in ASD, and an astute practitioner needs to ferret out and treat such maladies.

6. Follow a protocol. This is one of the most difficult parts of the initial treatment, because apparent regression can follow even the most uncomplicated interventions. For example, the negative behaviors that may result from bacterial or fungal ‘die-off’ when strong probiotics are initiated is frightening to families and requires coaching and counseling in order for the patient to achieve G-I balance. This step alone has discouraged too many parents from continuing biomedical intervention. As we increase cellular energy with supplementation, I frequently advise parents, “The side effect of giving a patient more energy is that the child will have more energy!” For aggressive or disruptive children, this is no small matter and there may need to be some changes or additional supplements to handle that alteration. In practically all areas of medicine, following protocols and altering them as things change is the hallmark of a successful course of action.

That’s it. Just a few steps that should be taken once the diagnosis is entertained to insure that, by today’s standards, everything that CAN be done is being done for your potentially-affected child.

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Brian D. Udell MD
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