April is National Autism Awareness month. For readers who don't have
children on the spectrum, could you please share a couple of facts that surprise people when it comes to autism?
I think people are most surprised to learn that children with autism can get better, so much so that some children are considered to be recovered, losing their diagnosis. While this is not the outcome for every family, what we do know is that the quality of life for each child with autism can be improved.
Your readers may also be surprised to learn that many everyday things like what the children eat and drink can impact their moods and behaviors greatly. Research from major teaching universities are confirming what parents and a handful of professionals have known for over a decade -- that this condition is not only about the brain, but is affected by the other systems of the body.
Many people think that all children with autism are gifted, having special abilities. Only a handful of individuals with autism have "special skills." Most individuals with autism have difficulties in communicating, which can lead to inappropriate behaviors. The general public may see how parents handle these situations and not understand the reasoning of what is being done. Many parents, including myself, have spent thousands of hours and dollars learning how to parent using a positive approach, shaping the responses of the child (which ultimately hinges on our actions and behaviors as parents and caregivers). That may sound like common sense, but it is amazing how many parents of neuro-typical children never look at how their actions are impacting the responses of the child.
There are so many disorders that fall on the Autistic Spectrum -- Asperger's, ADD, SID, PDD-NOS, just to name a few. What are some of the "early warning signs" that a parent should watch out for?
Some of them are listed in this exerpt from Unraveling the Mystery of Autism and ervasive Development Disorder: A Mother's Story of Research and Recovery by Karyn Seroussi. [Published by Simon & Schuster. Reprinted by permission.] If a parent is concerned about their answers to some of these questions, then they need to speak to their physician about an autism screening.
- Does your 18-month-old child's language development seem slow?
- Has he lost words that he had once mastered?
- Is he unable to follow simple commands such as "Bring me your shoes?"
- When you speak to him, does he look away rather than meet your gaze?
- Does he answer to his name?
- Do you or others suspect hearing loss?
- Does he have an unusually long attention span?
- Does he often seem to be in his own world?
At 18 months old, a child will typically do the following:
- Point to objects
- Interact with his/her siblings
- Bring you items to look at
- Look directly at you when you speak to him/her
- Follow your gaze to locate an object when you point across the room
- Engage in "pretend play" such as feeding a doll or making a toy dog bark
Autism is a developmental disability that impairs social and language development. It occurs in families from every class, culture, and ethnic background. It is not a mental illness, and it is not caused by trauma -- it is neurobiological and its symptoms can be greatly reduced by early diagnosis and treatment.
You've taken on a lot of different roles in the autism community. Tell us a bit about the different things you do and the companies with which you work.
I began working for Kirkman in December of 1999. I had personally become familiar with their nutritional supplements when I had introduced changes to my son's diet. I had removed the dairy (casein), and gluten from his diet and added a multivitamin called Super Nu-Thera [which is made by Kirkman]. Within weeks of making these changes, I saw an increase in eye contact from my son, something that I had not seen in a year. I began calling Kirkman, asking for samples of the Super Nu-Thera to share with other families. I wanted other parents to know that there was hope and that there were things that we could do that would impact our children's lives. I then met the owner of the company at a few autism conferences and we began a dialogue. A few weeks later, I was asked to join the company as a customer support representative. I later acquired my certification as a nutritionist.
That same year, I was asked to join the board of directors of a local autism support group, Families for Effective Autism Treatment -- North Texas. I have held various positions within the organization, ranging from President to Program Director and currently Director of Community Outreach. I became involved in state and nationwide legislative efforts regarding autism, education, and the development of services for future needs of individuals with autism.
In 2007, I created Natural Foods and Nutrition Consulting, Inc. My desire to support families who struggled with making dietary changes was the driving force behind this business. NFN provides comprehensive consultative services relating to natural foods and nutrition. We help individuals work through the maze of dietary modifications and nutritional supplementation programs that they may require due to allergies, gastrointestinal conditions, metabolic disorders, and behavioral/ developmental delays. For retailers that serve this growing population of consumers, we provide a wide variety of services and support. Last, but not least, is the Wellness program we offer to private businesses that want to support their staff in reaching their optimal level of health.
I met Jay Espaillat through FEAT about a year and a half ago, providing information on supports he should consider when trying to help his daughter with autism. One year later, Jay contacted me, sharing how autism was changing the course of his life just as it had mine. Jay had joined with other dads in a ground breaking partnership to create the world's first web-based video library dedicated to autism -- AutismSpot. I met with Kent Potter, the founder and CEO of AutismSpot, two days later.
It was what I would say was an "ah ha" moment, when you know you are exactly where you are supposed to be. I instantly knew this would be the beginning of something great. I was asked to join the AutismSpot team as the virtual web host, content specialist, and nutritional support expert. I also assist them in developing partnerships with private businesses who want to support the autism community by making information available on AutismSpot through monthly sponsorships of the website.
AutismSpot is different in that there is no agenda. The information we provide is unbiased and unedited. We provide information on a variety of topics that people may not have been introduced to due to their demographic location or financial resources. AutismSpot allows the viewer to see, hear, and feel the many emotions, challenges, and triumphs that are associated with living in the world of autism.
How has the autism community -- resources, research, treatment options -- changed in the 10 years since you first became involved with it?
Well I guess you could say it is completely different. When I started in the world of autism, very few people had even heard of dietary or nutritional support for autism. Families were told to just go home and love their children the way they were and instructed to look for long-term care and placement for the future. In just 10 years, the amount or resources has more than doubled. We now know that environment does affect autism and that this condition is not static as once believed. Researchers from prestigious universities like Harvard are confirming that this population has gastrointestinal and immune-mediated conditions that directly impact the behaviors and coping skills of these children. Treatments that are now available range from vitamin therapy to Applied Behavior Analysis to Hyperbaric Oxygen Therapy.
One of the most defining moments for the autism community happened just a month ago: The American Academy of Pediatrics announced that they were dedicated to partnering with organizations like DAN (Defeat Autism Now, which has lead the way in autism research) in finding effective treatment options for children with autism. This was a welcomed but overdue step in the right direction.
Many mainstream doctors tell their patients that changes in diet won't necessarily hurt autistic children, but say that there's no proof that it helps, either. What has been your experience with dietary and biomedical intervention?
My experience early on in my journey through autism was devastating and downright humiliating. I am not alone when I say that many medical professionals belittled me and the questions I asked on behalf of my son. In the beginning, I had resentment but, over the years, I have come to realise that in many ways the physicians are just as much victims of the system as we have been.
If I were to put a gallon of milk in my car's gas tank, people would think that I was nuts. But when I suggested that what my son was eating affected his moods and behavior, I was belittled. We know that what we eat can affect our weight, blood-sugar levels, and how we feel. Dietary intake is directly related to medical conditions like Celiac disease and diabetes. Why would we diminish its role in other states of disease or behavioral diagnosis?
What do you think about the thimerosol/vaccine issue and the idea of a "toxic tipping point"?
I do believe a "toxic tipping point" is possible when considering most chemicals. I am continuously amazed when I hear medical professionals defending the vaccination program as an entity versus showing genuine concern for the children who are involved in the process. When any practice is held in higher regard than the people it was designed to protect and serve, we have a problem. It makes one ask, why are so many people unwilling to consider that we may be inundating the immune systems of these children with so many shots in such a brief period of time? While we, the autism community, believe genetics plays a part in the autism epidemic, the reality is that a genetic epidemic is scientifically impossible.
Most parents, including myself, are not against vaccinations. We are for improved safeguards that ensure we are protecting the child who is receiving the vaccine. Vaccination is a medical procedure that is done in hopes of altering the immune system's ability to respond to a specific virus if encountered at a future date. We must also remember that a vaccine is comprised of many components -- not just a virus and preservative, but with additional chemicals that are used in the production of the product. If we did not think it could impact the immune system, then why do we give them to begin with?
This controversy should be about the science, not about biased science or big business. We want to have happy, healthy children just as much as anyone else. As a community we also believe that there are many contributing factors leading to the autism epidemic. To name a few ... we know that air pollution and chemicals from refineries as well as pesticides may very well play a part. It is my opinion that we can not afford to leave any stone unturned. The future generations of children depend on us.
According to US Department of Education data, the number of autism diagnoses in children in the US has risen 644 percent from 1992-1993 to 2000-2001. Are doctors simply more aware of autism, and so are able to better diagnose it? Are things previously dismissed as "quirks" now considered symptoms?
The diagnostic criteria have not changed that drastically in the past 10 to 15 years to account for the monumental increase in Autism Spectrum Disorders. If this was a condition that has risen due to better diagnoses, then where are all the adults with autism that should be accounted for? If the increase were due to children being reclassified, we would see the autism diagnosis increase and other disabilities decrease -- this has not been the case. The children who are now being diagnosed would never have "passed" as just being quirky. These children clearly have significant communication and social deficits that are debilitating.
What has been the most challenging part, for you, of balancing (or juggling!) work and family? Has this changed as your children got older?
The greatest challenge I have had has been trying to find the line where work ends and my personal life begins. When first entering the world of autism advocacy, I would find myself giving every minute of each day to parents and professionals who were seeking information, support, and hope for the possibility of a brighter future for their child. As the years went on, I found myself searching for a better balance where autism was a part of my life but not my life in its entirety. I began focusing more on my own family's needs and began the process of creating healthy boundaries. With that being said, I can easily admit that I am still very driven and passionate about my work and the people I serve within the autism community. I believe the difference is that I take the time to be involved with my children and my husband in times when they need me the most. Working from home is a trade off. Most people think that it will simplify their life, but if you are driven and passionate about what you do then it can actually become more difficult when trying to end the work day.
Parenting a child with special needs can be difficult even on the best of days. How do you recharge your batteries?
There are days when having a special needs child is harder than others, but I am still able to see the blessing autism has brought me. I have been extremely blessed to have very dynamic people in my life. My family and the friends I have made along the way are irreplaceable, but the primary support that has sustained me through the journey of autism is my faith in God. I have found we can always find purpose in the pain if we are able to look beyond the immediate circumstances. I believe that my purpose is to blaze a trail that will allow others to have access to the resources their children need. Finding these same resources and supports, learning how to navigate through the system, took me many years and sleepless nights. I wish I could say that I had some routine or special way of pampering myself, but the thing that recharges my battery the most is seeing how the information or support I have given a family ultimately changes their life for the better. I continually find joy in watching my son reach milestones we were told he would never reach, along with the successes all of my children continue to realize.
What would you tell a parent whose child has been newly diagnosed with PDD-NOS?
I would encourage parents to leave no stone unturned when looking at what is the right therapy and intervention for their child. I would encourage them to give everything they have when trying to meet the educational and behavioral needs for their child. We have a saying in the world of autism, "You either pay now or pay later." This means that you ultimately have to find an effective way to deal with the challenges of autism. By providing the resources and support the child needs early on, you may bypass secondary consequences that would have arisen from those needs going unmet.
Parents must also give themselves grace. You must pace yourself to prevent burn out and, regardless of your financial resources, know that you can positively impact your child's life. Autism is an expensive condition to treat and live with, but resourceful families have found ways to work the system regardless of what funds are or are not available. You can do autism on a budget, it just may require a bit more planning.
Last, no matter what levels of functioning your child may be at, know that there is HOPE!
Wednesday, April 23, 2008
An Interview with Autism Activist Mika Bradford
Mika Bradford became involved in the autism community nearly a decade ago, when her youngest son was diagnosed with autism. She works for Kirkman -- a leading providor of specialty nutritional supplements -- as an outside sales rep and certified nutritionist, has held a variety of positions with Families for Effective Autism Treatment -- North Texas, founded Natural Foods and Nutrition Consulting, Inc., and recently became a content specialist for AutismSpot, a web-based support site for parents, medical professionals, and educators that offers an online video reference library, blogs, and a wealth of unbiased information for helping children with Autism Spectrum Disorders.