Q & A

Karen, as a parent of six children, how do you balance your time and care for your two special needs children and the four normal children?

Oh my God, that’s the single, biggest challenge I face, especially since my husband works 24-7.  I guess I can say that I don’t over-do the mothering role like many parents do.  There’s no “white glove test” in my house.  The older kids help out with the younger, which helps tremendously. I also wholly believe in seeing ALL my children as “able” and to treat them just like anyone else. The special needs ones can’t use their differences as an excuse.  Also, letting go of “perfection” as a model of success is most important.  It’s more important to enjoy the journey!

As the parent of a child with autism, what words of encouragement and guidance can you offer parents and caregivers of children with special needs?

Enjoy the brilliance your child brings to the world regardless of how hard it may be to find at times.  We can always choose how we want to feel about any given situation, so a parent can say “I see peace instead of this.” I’m not saying it’s easy to take this attitude, but it certainly can be done.  This way the parent can step out of the victim role and walk calmly into the role of empowerment to do whatever it takes to make everyone’s life better.  I believe it’s true that what you focus on expands, so by paying attention to the strengths and positive attributes these special people possess, it will enable them to feel good about themselves and perhaps develop life-skills that will enhance their lives and the lives of others. Also its important to get to know other parents with special needs children.  No one needs to do this alone and parents can share their stories of humor and the challenges while supporting each other during trying times.

What are the five myths many of us have about children with autism?

  1. That people with autism are retarded
  2. That people with autism can’t have relationships and get married, have jobs and go on to live normal lives.
  3. That people with autism don’t have any feelings and emotions
  4. That “refrigerator moms” cause autism
  5. That autism can’t get better

What’s the difference between autism and Aspergers Syndrome?

There are many different views even amongst the professionals in the field on this subject.  Typical autism, rather than high-functioning autism, is associated with the lack of language skills, severe behavior, and the inability to function with their peers.  What is more difficult to differentiate is the high-functioning autism and Aspergers.  According to the DSM4, which lists the diagnostic criteria for autism, a person with high-functioning autism has significant language delays and adaptive skills when compared to the development of their “so called” normal peers.  This diagnostic tool is rapidly being challenged and by the time the DSM5 is completed it will most certainly be a completely new and different set of criteria.

How would you advise the professional community of doctors, therapists, and educators to change their approach in how they treat and view children with autism?

First I would make sure they understand exactly what the autism spectrum is and how to properly recognize and diagnose it. It is appalling in this day and age to have professionals still tell parents to come back in a year after diagnosing a young child with autism without providing intervention or direction.  Also professionals have been diagnosing children incorrectly in order to obtain maximum funding, which can skew the figures for autism.    I would also encourage them to be more open-minded as far as using biomedical interventions such as nutritional considerations and other types of alternative therapies when talking to parents of newly diagnosed children with autism.  They need to understand the importance of early intervention in the life of the child so they can advocate and prescribe appropriate medical and non-medical interventions for the child.

What should a parent keep in mind when it comes to helping the siblings of a special needs child to understand the limits—as well as the feelings—of their less-able brother or sister?

In real estate, it’s about location. In special needs, it’s about communication, because when the special needs child has difficulty communicating their thoughts, ideas and feelings, they become quite frustrated, which can result in a behavioral meltdown.  This can lead to ridicule and they can become targets for bullying.  What is most important is that the siblings realize that their special needs brother or sister isn’t always less abled, rather, they are differently abled.  For example we focused on Jonathan reading to his older brother’s grade 4 class when he was 4 years old, which was very good for his self-esteem and their relationship as brothers.  Matt was very proud of his brother. It is difficult at times for siblings to see that there are actual limitations, especially in the case of an invisible disability like autism or ADHD. You must clearly explain, as far as the sibling is capable of understanding, what the disability is and what the biggest challenges are in minute detail.  Role-model appropriate interactions when possible, and at the same time, teach both the special needs child and the sibling to treat each other like any other human being, with respect. They must defend their special needs sibling to the bitter end especially when they are bullied.

What are the symptoms of autism and when do they develop?

Autism can be detected in children as young as six months but is not usually recognized until around the age of two.  Some of the earliest signs include a certain gaze they have and towards people while lying in their crib.  They may be fascinated by a swirling fan staring at it as if they’re hypnotized.  When the child is around 3 to 5 years old, typical signs of autism include spinning in circles, flapping their hands in the air, lining objects up on the floor, watching the same movie over and over, displaying an apparent lack of fear in dangerous situations and so on.

How is an autistic person treated, medically?

There is really nothing medically wrong with people just because they have autism since it is a neurological difference in the brain’s wiring.  However, many people with autism have gastrointestinal disturbances that should be looked into because if they go undetected they may result in behavioral, interactive and learning difficulties.  Sometimes medications are prescribed for children so they can attend better during school and at home.  Many people have also had success using vitamins and nutritional therapy in treating their child’s autism.

What causes autism and how can we reverse the epidemic that has seen us go from 1 in 10,000 in 1985 to 1 in 166 in 2005 being diagnosed with autism?

The most current research suggests a probable genetic factor, which in some children can be triggered by a number of possible factors such as vaccines, heavy metal toxicity and other prenatal conditions occurring prior to birth.  Most professionals in the field believe you can’t reverse autism but you can implement certain treatments and methodologies that will help the child cope and overcome many characteristics of autism.  There are however, some people who believe autism can be cured, though the jury is still out on this one.

How did you find the resources—time, strength and money—to create Autism Today?

Slow and steady wins the race!  It evolved over time starting out like all other sites, one member at a time while working from my home.  I created it because when my son was diagnosed, it was close to impossible to find what I needed, so when I did carve a pathway I didn’t want it to be just for one child.  I wanted it to be for every child.  So far, all the revenue I have generated has gone right back into the Website to make it even better for the members and supporters.  Time, well since my mission is also my passion, it seems to flow right into my life.   I find the time to work on it and time finds me.  My thinking of the ideas to implement happens when I’m driving in the car or even when I’m in the shower.  I just keep a stack of post-it notes handy to write down the ideas as they pop into my head.  Strength, well it isn’t always easy.  Sometimes I have to escape from all the distractions of my life to build up my strength just to think.  I must always ascertain what my priority is and stick with it.  Most importantly, as long as I hold my vision on what I am doing, it unfolds as it should, synchronistically leading me down a pathway to what the parents, professionals, people with autism, and educators truly need and want.

Karen, you nearly died giving birth to one of your children. How did that event change your perspective on life?

Until I went through that experience following the birth of my sixth child, I was working in the gemology/jewelry field.  My focus was selling jewelry and while I was happy doing what I was doing, I didn’t feel like I had a true mission and purpose for my life aside from my children and family. After I recovered, I was drawn to become the founder of a non-profit organization, write books, host conferences and of course, creating Autism Today. The experience helped me see the true meaning and value of life, which is to live fully and completely, learn as much as you can, help others along the way, and leave a legacy.  My father just passed away and though he will be remembered by some, the effect of his life will not have an impact on humanity.  My great Uncle, George Lacy, was one of the three people who donated the granite to the Texas State Capitol in Austin.  I know how he will be remembered for many years to come.

Is the Federal Government doing enough to support the families with special needs children? What can we do better or differently?

There is a tremendous lack of interest and resources allocated through the government and other agencies towards a solution.  This includes actively determining the cause of autism and implementing adequate research towards curative and helpful measures.  The US Government will happily spend 1.9 billion dollars for a single Trident nuclear submarine in a fleet of around fifty, yet is only spending 66 million on the entire special education area, which includes special teachers, training and proper equipment and supports.  Much needs to be done in this area.

Let’s face it; most people don’t want to be you. They pray to have normal, healthy children and to avoid what you’ve had to go through. But now that you have lived through raising children with special needs, can you help explain to us how you are able to do it?

Believe me, I prayed for healthy children too!  When I first discovered the challenges I would face and that my 2 special needs children would face, I was devastated.  That was a turning point in my life because at that point I could have chosen to deny there was anything wrong, or feel victimized by the situation, so I chose to embrace the difficulty and make the commitment to do whatever it took to help my children and others along the way.  I knew that others were facing similar problems and maybe they didn’t have the support or resources to help their children so I decided to commit to helping them as much as I could along the way.

You also founded KEEN—Key Enrichment of Exceptional Needs. What is that?

It is a non-profit organization with the following mission: “to provide key education for kids with special needs.” Every day, millions of people worldwide are diagnosed with some sort of special need. These special needs could be autism, Down syndrome, cerebral palsy or Tourette’s syndrome. Some argue that the recent increase in diagnosis is due to improved technology, higher medical awareness, improper diagnosis and environmental conditions. It’s so easy to think of the label and the diagnosis rather than the real person who is struggling to contend with it. These individuals have real special needs and they face real daily struggles. Our goal is to enhance the education and life experience of these special needs individuals and their guardians where funding is otherwise not available. The outcome is to empower these individuals to become productive, independent, happy and fulfilled members of society, which will dramatically decrease the tremendous cost of their care to society while improving the quality of their lives.

You speak of how we should celebrate the gifts of those who are different. How do you seek out the good, the creative, and the unique in others?

Everyone who spends time with anyone can certainly find something good that they do.  No matter how small it is you can focus on it and give positive reinforcement for it.  Maybe it’s playing a song on the piano or coloring a pretty picture or writing a poem.  When I sent out an invitation for artwork submissions for my Artism book, we were inundated with artwork from people on the spectrum from around the globe.  I am writing an E-Book called Autism 101.  To me, the most important section in this E-Book are the comments from those with autism, which raise their self-esteem as we are talking with them, not about them.  I am also developing a site for people on the ASD Spectrum called ASDCommunity.com.  By doing this, we embrace people for who they are and the gifts they bring to the world.

You also use humor as a form of coping and healing. How do you help others lighten up?

I tell them not to take life so seriously.  Watch sitcoms instead of scary movies! I share some of the funny ways Jonathan perceives the world and some of the funny things he’s done.  People with autism are literal thinkers, which make some of the comments they make and the perceptions they have quite funny.  Like, why do we toast the bride, mom?   There’s a book by Wayne Gilpin called Laughing and Loving with Autism, which shares my sense of humor.  It’s filled with funny stories parents tell about their children and is a must-read for parents of children with special needs.

What is it like to have autism? How do they see the world and what are their typical limitations?

It depends on the “autie” as Stephen Shore, a dear friend of mine who is also a person with Aspergers Syndrome, would say.  They perceive the world differently than we do.  Stephen bases this on his own life experiences.  Of course I ask him how he knows he’s different than me and he’s stumped since he is also a literal thinker.  People with autism vary across the autism spectrum more than the so called “ neurotypicals” which is a term autistic people made up to describe us, the so called “normal” people.  They have a tendency to become very focused on their interests, which allow them to hone their skills.  Perhaps some of the most brilliant minds in the world had a form of autism like Albert Einstein, Marie Curie, Carl Sagan, and many more.

What are the six things society should keep in mind in how it views, interacts with, and helps those with special needs?

  1. Inclusion for all people, regardless of their strengths and weaknesses is important.
  2. It takes a community to raise a special needs child.
  3. Focus on the positives they possess and help their light shine.
  4. Treat them like regular people as much as is possible, not in a degrading manner.
  5. Be careful not to overprotect or mollycoddle them.
  6. Don’t favor them simply treat them with respect.