Do you know what I want to be when I grow up?

The other night my son with autism posed this question to me. It caught me by surprise, really. He has never talked about this before and I didn’t think he thought that far out into the future. I remember the milestone he accomplished in Kindergarten when he understood the concept of next week or next month. Most kids with autism usually don’t grasp time concept easily.  We take much of our understanding of language and abstract concepts for granted.

Understanding abstract concepts usually develops naturally, but for a child with autism it can cause confusion. Most kids on the spectrum are concrete and literal thinkers and “the future” is a concept that is difficult to grasp. The other hurdle is that your child with ASD may be a visual learner or thinker. If they can’t visualize the future, they don’t understand this concept.

The key to teaching abstract concepts like time, is through visuals. Saying to your child that “We are going to the party on Saturday” will cause confusion if they have no concept of time or how the calendar works.  Showing visuals with a calendar that shows them the current day, number of days until the event and written party on the day of event can help them learn this concept.

We worked with our son on time concepts, past, present and future in his behavioral therapy sessions. He also learned it at school, but it took him longer to grasp it than it did his peers. We’ve known that he understands future concepts for a while now, and he has shown more and more an understanding of it.

For instance, he is in 2nd grade right now, and his older brother just went on a week-long trip with his 6th grade class to a marine science camp. He is looking forward to his turn and talks about how long it is before he is in 6th grade and can go to camp. So it shouldn’t have surprised me when he spoke of the future in terms of when he is grown up, but it did. I just needed reminding that he is going to be grown up one day, and will be just fine.

By the way, my son told me he wanted to be a football player.  I asked him why a football player (since he doesn’t play it) and his reply was “so daddy can watch me on TV”.  Hmmm, maybe my husband’s love for NFL football is contagious. Either way, I’m comforted by this conversation and very hopeful for his future.

A good resource for teaching time concepts on the web is by Lucia Smith, a speech pathologist. Here is the link to her document:

http://pelicantalk.com/autism_files/autism_resources_files/time%20concepts.pdf

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I Thought I Knew It All (well, most of it)

I’ve learned about most biomedical interventions for autism and really thought I was just going to “refresh and recharge” my batteries that fueled the science geek in me.  Where did I go, you ask?  The 2010 Autism Research Institute’s (ARI) Conference held in Long Beach, CA on October 8-10. That’s where doctors, research scientists and parents discuss the exploration and evaluation of scientifically documented biomedical interventions for individuals within the autism spectrum.

Well, of course no one person can possible know about every aspect of this medical research, but as a parent whose life has been engulfed by it, I thought I knew most of it.  Well, I don’t, and I find that exciting. We are still learning about autism and the sensitive biochemistry of our children that are triggered by various environmental assaults. Unfortunately, more research still needs to be done, more children will be hit by the “autism bus” and more parents will demand answers on why this is a growing epidemic.

I have said before on my blog that I believe autism is not solely a disorder of the brain, but one that affects the brain, the immune system, and the gut. Well, one of the leading autism research scientists is Dr. Jill James, PhD from Arkansas Children’s Hospital Research Institute, and she spoke at the conference on her research done on oxidative stress in autism.

Oxidative stress is a condition which occurs when the production of free radicals in the human body exceeds the body’s ability to neutralize and eliminate them. Oxidative stress can result from a lack of antioxidants (like vitamins A, E and C) or from an over abundance of free radicals. Free radicals can react with key components of cells including DNA, lipids, and protein, resulting in cellular damage.

Dr. James discussed  “The Autism Triad: Brain-Gut-Immune Axis” which are inter-dependent and their individual balance requires each other. All three systems are highly sensitive to oxidative stress, especially during critical developmental windows. A healthy brain needs to develop in a healthy immune system and gut. All three systems are immature at birth. Gene and environmental interactions affect the intracellular GSH/GSSG (ratio of reduced glutathione to oxidized glutathione) and the maturation of all three systems.  GSH/GSSG is the measure of cellular toxicity. Glutathione is our body’s primary antioxidant that protects red blood cells from damage and destruction by mopping up toxic free radicals. (side note: Did you know it is also needed for the action of insulin?)

A toxic inflammatory insult in one of these (brain, immune system, gut) can indirectly affect the development and function of the others. Wow! That says it all for me. In other words, if your infant or young child has inflammation in their immune system from a virus (acquired/immunization), the development of their brain and gut will be affected. Or perhaps your child had numerous ear infections and prescribed antibiotics. Their gut was affected by the reduction of good bacteria (wiped out by the antibiotics) vs. the bad bacteria that took over. This is an example of an inflammatory insult to the gut, which indirectly affects the development of the brain and immune system.

Oxidative stress may be a final common pathway for many structurally diverse environmental exposures such as heavy metals (lead, aluminum, arsenic, cadmium, mercury), solvents (alcohol, chlorine, benzene), and industrial chemicals (PCBs, pesticides, herbicides). All of these induce oxidative stress and deplete our body’s store of glutathione. Dr. James noted that a combined sub-toxic dose of these can reach a toxic threshold. Which means that our children can be exposed to these individual toxins at levels that are not considered toxic by our FDA/EPA, but the combined doses reach the toxic threshold.

This is exactly the point I continually try to make.  That our environment has a combination of toxic exposures that is affecting our current and future generation of children. It’s also affecting us as adults. It may not present itself as autism for us “grown ups”, but as Alzheimer’s, Parkinson’s, cancer, etc.

Research in this area needs to continue and I am grateful for ARI, the doctors, scientists and parents that contribute their documented studies on biomedical interventions for autism.  Thanks to them, children are recovering and parents have hope. Perhaps our FDA and EPA could learn something from this community if they would just pay attention. I do know one thing. These agencies that are assigned to protect us certainly don’t (or choose not to) know it all.  And neither do I.

What About Neurofeedback Instead Of Drugs?

When our son was diagnosed with ADHD approximately four years ago, we looked into a drug free treatment for it and stumbled upon neurofeedback (NFB). We never did take the pharmaceutical route, but it wasn’t until this past January (four years later) that we finally jumped in feet first and committed to the neurofeedback for our son. He was 10 yrs old. Our son had difficulty focusing, self-initiation of work, emotional and impulse control, incomplete classwork, couldn’t take notes during lectures, or do his homework without my constant nagging, prodding and watchful eye.

Oh, how I wished we had saved him years of frustration, poor self-esteem, forgetfulness and difficulty with school and homework by doing this back when he was 7 yrs. old.  It is by far the most effective treatment for ADD/ADHD I have ever experienced. We’ve done biomedical treatments for him which has eliminated a lot of symptoms, but his brain neurons needed more help. I highly recommend incorporating biomeds or at the bare minimum, a clean diet with neurofeedback.

The brain is going to need all the support it can get and the first thing you should do before starting NFB is to change the diet. By eating fruit and veggies with less pesticides, no artificial dyes/flavors/preservatives, eliminating msg, nitrites and sulfites. Yes, that means cut out Gatorade, Flamin Hot Cheetos, Skittles, Beef Jerky, cured meats and add in whole grains, lean protein, fruits and vegetables. Oh the horror! Trust me, the pay off is well worth the pain of denying a 9 yr. old his request to stop at 7Eleven for his favorite junk food run.

What is Neurofeedback?

Neurofeedback is a type of biofeedback. In biofeedback, information about some part of your body is fed back to you, and you are able to gain control over yourself in a way previously unavailable.

In neurofeedback the information that is fed back to you is EEG (electroencephalogram) data read by sensors placed on your head. Very tiny amounts of electric energy are read and processed by electronic and computer equipment to provide you with moment by moment information about your brain activity.

Brain cells communicate with one another, in part, through a constant storm of electrical impulses. Their patterns show up on an electroencephalogram, or EEG, as brain waves with different frequencies. NFB practitioners first create a “brain map”, the initial EEG readings on their patient to serve as a guide for treatment.

Excessive fast or slow activity is associated with brain dysregulation, and a variety of clinical symptoms.  For example, my son’s EEG showed high Theta waves which are responsible for our daydream state. That explained why he “zoned” out in class and daydreamed, lacked focus and attention. The EEG can show which areas of the brain have high or low wave frequency, or when parts of the brain aren’t communicating adequately with other parts.  Training changes in that activity helps improve self-regulation.

This activity is shown to the neurofeedback therapist as wave patterns on a computer screen, and to patients as visual graphics–ranging from cars racing one another to rapidly changing side by side puzzles. The NFB practitioner will help the patient speed up or slow down the brain waves. The goal is explained to the patient (make one car go faster than the other), and the brain learns how to make that happen without the person knowing how they do it. A sound also beeps when the brain behaves as desired, which helps. Simply wanting to hear the beeps seems to be enough to get the brain to cooperate. This is known as operant conditioning, which forms an association between a behavior and a consequence.

Why do neurofeedback?

When you or your child has difficulty paying attention, or has feelings of depression or anxiety, or perhaps can’t stop thinking about something, is it a psychological or a physiological problem?

Utilizing neurofeedback to train the brain can change these problems.  This is a short list of what NFB can improve:

  • alertness
  • attention
  • emotional regulation
  • behavior
  • cognitive function and mental flexibility

Some of the conditions NFB is used to treat are:

  • ADD/ADHD
  • Autism
  • Epilepsy/seizures
  • Migraines
  • Anxiety
  • Depression

When you change the brain, it undoubtedly affects the mind.  The NFB training produces a measurable physiological effect on the brain.  When you give the brain information about itself, it has an enormous capacity for change.  Neurofeedback makes the information available to the brain almost instantly, and asks it to make adjustments.  The brain can respond rapidly.  Changes in the EEG due to feedback tend to correlate with improved behavior, mood, affect regulation and attention.

Our Success Story

Neurofeedback is usually done in 1/2 hr sessions, one to three times per week. Approximately 30-40 sessions are the standard for optimal change in brain waves. After the first 10 sessions, about 3 weeks into the therapy, I noticed the first dramatic change in my son. He no longer displayed oppositional behaviors and his emotion regulation was normal. He used to anger or get frustrated easily, but that was changed to a more normal emotional response. About the 20th session, his teacher at school noticed his ability to start his work independently. He was able to complete his work 75% of time and it was improving with each session. By the end of 40 sessions, my son was able to focus in school, complete assignments, take notes, write paragraphs unassisted, start and finish his homework by himself.

NFB is not covered by most health insurance and can be costly. The price ranges between $3,000- $5,000 for the brain map and 4o sessions. The good news is that NFB changes are permanent. As a parent that has forgone new living room furniture, a new car in the past 7 years, and countless other material things, the cost was well worth the payoff for my child and my sanity!  NFB works.  All I can say is if you are considering it, do it now. Don’t put it off until “we can afford it”. Work it out and it can change your child’s life. It has mine.

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