Opinion, Resources

Diagnosis: Autism - The Letter I Wish I Had Received

I’ve become the unofficial autism ambassador in my local mothers’ group.  In one 24 hour period, I received two e-mails - one from a concerned aunt, one from a mother of a toddler with some symptoms of autism - requesting information about the diagnostic process and everyday support for an autistic child.  I’ve written about 10 responses to requests like these so far this year. Here is a composite of my responses for all those families out there who are just starting to consider the possibility of autism in a beloved child.  Please note that I claim no medical or therapeutic expertise: I’m just a mom with ten years of experience caring for a child with autism, and this is the letter I wish I had received nine years ago.  If you know a “Jennifer” or an “Aidan,” please share this letter with them.

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Dear Jennifer, I’m so sorry to hear about your concerns for your son Aidan.  No, I’m not at all offended that you asked our mutual friend for my e-mail address.  In fact, I wish I had someone to guide me through the confusing process of diagnosis and treatment for my son many years ago. If you are already asking questions about autism, then you probably know about the Modified Checklist for Autism in Toddlers (M-CHAT).  You’ve probably also read some basic information about what autism is and isn’t - for example, many assume that a nonverbal toddler is autistic.  I think it’s important to remember that some nonverbal children do not fit the diagnostic criteria for autism, and some verbal children who use language in unusual ways do receive a diagnosis of autism.

Ruling Out Other Conditions

The first step in the process is to rule out other medical conditions that may require immediate attention.  I’m sure Aidan’s speech therapist has already asked if he had a recent hearing test.  My son’s speech therapist explained to me that a child may be able to hear some sound frequencies but not others, which affects speech development and behavior.  A pediatric audiology lab will have specialized equipment to test a non-verbal toddler’s hearing, and if your pediatrician writes a prescription for the test, it is often covered by insurance. Another medical issue is the possibility of petit mal seizures.  According to the Mayo Clinic, petit mal seizures (also called absence seizures) last only a few seconds and look like “staring into outer space.”  A diminished ability to learn or pay attention may be the first sign of petit mal seizures.  The seizures may become longer or more frequent over time, so it is necessary to consult with a neurologist if seizures are suspected. A third medical issue is gastrointestinal distress, which can cause all kinds of odd behavior and disturbed sleep.  If a child is suffering severe constipation, frequent diarrhea, gas or abdominal bloating, a change in diet may be necessary, as well as a visit to a pediatric gastroenterologist.  The simplest dietary change is to remove artificial colors and flavors from all foods.  In 2004 and 2007, double-blind, placebo-controlled studies found a significant reduction in hyperactivity when artificial food coloring and the preservative sodium benzoate were removed from the diet.

Professional Evaluations

I know that some general pediatricians still advise a "wait-and-see" approach for autism in toddlers.  However, this approach is potentially harmful in the case of autism due to the risk of developmental regression, or loss of skills.  A child who is constantly losing and re-learning the same skills will be unable to catch up with peers who are making consistent developmental progress. If you wish to pursue a medical diagnosis for Aidan, a developmental pediatrician or a developmental psychologist can help you.  The main thing to ask about before the appointment is which diagnostic protocol is used by the evaluating team.  The ADI-R and ADOS diagnostic protocols are considered the most accurate, objective diagnostic tools for autism in North America.  Some physicians still do a subjective assessment for autism, which is a less accurate method that fails to eliminate other conditions similar to autism. Your local school district can do a free evaluation to determine if your child is eligible for therapeutic services, but this is not the same as a medical diagnosis.  The therapeutic services offered through the school district are free, and may include speech therapy, occupational and sensory integration therapy, physical therapy, social skills groups and feeding therapy.

What You Can Do At Home

You do not need a medical diagnosis or school evaluation to begin helping Aidan.  There is quite a bit that you can do on your own at home.  For starters, you can manage the sensory environment -- look at the light, colors, sounds, smells, flavors, textures and opportunities for movement in your home through Aidan’s eyes.  You may discover that he needs blackout shades for his bedroom, better ventilation in the kitchen, or a mini-trampoline in the living room.  We keep an air cleaner next to our son’s bed to provide calming white noise, and he sleeps with an 8 pound weighted blanket at night. You can prevent meltdowns by using picture schedules and social stories.  A picture schedule does not require any words -- you just photograph each step of a process and arrange the photos in order.  A social story is a short first-person narrative using the simplest language and images possible to describe an event.  It could be an everyday event such as a walking to the school bus stop, or a less frequent event such as a dentist visit. You may already know that I’m into play therapy.  Play therapy has no adverse side effects.  It is relationship-based, which means that the parent has an advantage over professionals in this type of therapy.  I recently wrote an article explaining how to get started with play therapy:  You can use play therapy to target the goals that you want your child to reach; you can focus on sensory integration, life skills, reducing anxiety, etc. depending on the activities and directed interactions that you choose. I recommend the books “Engaging Autism by Dr. Stanley Greenspan, “The Out-of-Sync Child Has Fun” by Carol Kranowitz and “Giggle Time” by Susan Aud Sonders for excellent information about practicing play therapy at home. We have a membership at the Friendship Circle.  It's a non-profit organization with a recreational facility and various programs for families of children with special needs.  Each of the activity rooms has a different sensory focus, so there's a music room, gross motor room, sand room, water room, art studio, light room, etc.  If you like, we could meet there to talk during open play.  You won’t believe this place until you see it. I'm familiar with the feeling of jumping head-first into the deep end of the pool with no swimming lessons.  I am here for you when you have more questions.  I am praying for your family. Love, Karen