Isn't it Autism? Ten Tips for Parents who Suspect Autism (Part II)

by Shannon Nash

Shannon King Nash, the proud mother of an autistic boy takes you through her journey of loving, caring and helping a child with special needs. Approximately one out of five children under the age of 18 has a developmental disability or neurological disorder – some 10 million children. Most people know a child that is suffering from some disability, but many don’t know where to turn for helpful information. In the Special Needs Journey, Ms. Nash covers a myriad of issues affecting children with special needs in the hopes of inspiring everyone to see the beauty of all children. From diagnosis, treatments and therapies, special education, and coping with daily life, this column will empower parents, family members, professionals and friends to help these children reach their fullest potential.




Autism is no longer the rare “Rain Man” disorder. New reports place autism as occurring in one in 250 children – that’s more common than multiple sclerosis, cystic fibrosis, sickle cell or childhood cancer. Kids on the autistic spectrum range in looks, race, behaviors, and abilities. In fact, most people know someone with autism. Yet, there is little information on autism in the black community. I learned about it through hundreds of hours of research, reading, doctors’ visits, phone calls, and prayers. Here are ten things parents who suspect that their children may be autistic should consider:

1. Follow your instincts – You know your child better than anyone, even if you are a first time parent. I was in deep denial. But when I look back, everything was right there in front of me when my son was about 18 months old. Your doctor may tell you not to worry at 18 months. However, a lot can be detected by this age. It’s important to get help early. The quicker the intervention, the better you can improve your child’s quality of life. And if your doctor is not helping you, get a second opinion or a new pediatrician. In particular, look for a developmental pediatrician or a pediatrician that is very familiar with special needs kids (more on this under Tip #3). But don’t panic if your child misses a few milestones. It is very possible that he is a late bloomer. However, you certainly won’t hurt him, even a late bloomer, by following any of these tips – such as getting his hearing checked or having him see a developmental pediatrician.

2. Get your child’s hearing checked - I believe all children should get their hearing checked after the 1st birthday. The fact is, unless your child is having severe ear infections your doctor will probably not recommend a hearing test. Some children, like my son, have acute era infections and suffer from Otitis Media or OME, but show absolutely no warning signs – no coughing, no fever, no tugging at the ear, nothing! Yet, these kids are experiencing hearing loss- all of your words come across muffled – like a constant state of being under water. Without a hearing test I would have never known that my poor guy just could not hear me. Although my son still had other developmental problems, they were greatly exacerbated because of these hearing problems.

3. Find the right doctor – Even though we were ready to admit that our son might be autistic, getting the proper diagnosis from a doctor was not easy. Our first doctor (a regular pediatrician) brushed off our concerns – after all boys will be slower than girls. The next doctor, the purported expert provided by our state’s agency charged with helping families with disabled children, concluded that he was mentally retarded. On top of all of this, many of our friends and family members thought he was just “slow.” All of this would have been okay except that it did not explain his odd obsessions and behaviors. It was not until we took him to a child psychologist who specialized in neurological disorders, followed by a visit to a developmental pediatrician, that we finally got a better picture. These doctors are familiar with kids that have a myriad of developmental delays and can be very helpful in developing a course of treatment for your child.

4. Understand Diagnostic tests – Doctors will use these diagnostic tests to evaluate your child (See part 1 of my article on the autism signs). It is important to understand what these tests are, how they are given and what the results really mean. Typically, doctors will use the Gilliam Autism Rating Scale or the Childhood Autism Rating Scale to determine autism. They will also use the Vineland Adaptive Behavior Test (a behavioral and social skills test) and the Wechsler Scales of Intelligence (an IQ Test) to determine any other developmental issues. A terrific source on these tests and what they mean is in a book by Roger Pierangelo and George Giuliana, Special Educator’s Complete Guide to 109 Diagnostic Tests. These tests can also be purchased, along with instructor’s manuals (see Web sites under tip #8). From the age of two, my son was given the Vineland Adaptive Behavior Test on an almost annual basis. Since he was nonverbal for so long, I doubted the results that these tests were providing – that my son was clearly mentally retarded with enough autism tendencies to be placed on the autism spectrum. This same test was recently given to him now at the age of 5 and it shows him as well out of the mental retardation range – what a difference 3 years of intensive therapies and early intervention services can make. Because I was educated on how these tests were given and what their result meant, I knew all along that he was not mentally retarded. The lesson here – know the tests and never give up on your child.

5. Get to know your insurance coverage – If your child is has any special needs you will undoubtedly need insurance. But you likely you need a law degree to understand all of the policies and procedures (and this is coming from a lawyer!) That’s why it is important that you not only try and understand your insurance policy but also find a doctor that can help you maneuver through all of the red tape.

6. Develop an early intervention plan – We are in the midst of an autism epidemic – there are many public and private organizations working on a cure. It is imperative that you stay up on the latest therapies. From common therapies like speech and occupational therapy to innovative therapies that have proven to be helpful in recent years like music and equestrian therapy, today’s parent must know it all. Also get to know more about behavioral therapies like: Applied Behavior Analysis or Loovas, and the Son-rise method by the Options Institute or Floor Time by Dr. Greenspan, just to name a few. Holistic and medical treatments may also be part of the equation. The Gluten Free Casein Free diet (GFCF Diet) which eliminates glutens (proteins like wheats and oats) and casein (milk) from the child’s diet, has been helpful in some kids with autism. Moreover, drugs like Ritalin and a new drug, Risperdal, have reportedly helped with behaviors for some autistic children. Finally, each state or locality has a department or agency that is required by law to help your child get educational services. You will write an IEP or Individual Education Program that is designed to measure your child’s progress and set goals for his or her improvement. For more information on these treatments and therapies see the Web sites under Tip # 8.



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