Tread carefully, but there are important gains to be had.
One of the hardest decisions to make is whether to introduce pharmaceuticals into your child with autism spectrum disorder’s (ASD) life to help him/her with the myriad of symptoms and complications that can make life very difficult for your child, his/her caregivers, teachers, and your family.
It’s daunting to consider giving drugs to a child whose mind and body are still developing, and there’s not always reliable information about how this could affect his/her growth and future development.
But balancing this is the ever-tempting promise of increased attention, better learning, and improved sleeping, behavior, mood, and overall happiness. And it’s always okay to say no to medication if you’re afraid it won’t help or may even cause harm.
It has been established that many conditions are comorbid with autism, such as sleep disturbances, attention deficit hyperactivity disorder (ADHD), mood problems, tantrums, acting out, irrational disobedience, generalized anxiety, obsessive-compulsive disorder (OCD), eating problems, gastrointestinal problems…the list goes on and on.
While there are only a few medications approved for the treatment of autism, there are many drugs which can be prescribed to treat symptoms such as depression (venlafaxine), OCD (clomipramine), ADHD (methylphenidate), anxiety (guanfacine), irritability (risperidone), and tantrums (aripiprazole), just to name a few.
I must stress I am not a doctor and can give no medical advice. However, this is where an established child psychiatrist and/or other specialists with experience with children on the spectrum can carry a lantern in the dark for you. And the best advice you can get is to let them lead the way, and act as a partner while paying close attention to the results of any medications they prescribe.
Our eldest son William was diagnosed as being on the autism spectrum when he was two and a half. Shortly thereafter, we started on 20 hours of ABA, speech, and occupational therapy weekly. His therapies increased gradually to about 35 hours a week combined.
He made modest, steady progress punctuated by massive leaps forward and occasionally a period of what we referred to as a “turnaround,” where he would lose ground temporarily and also find himself in a ubiquitously obstinate mood. It was two steps forward and one step back, as the saying goes.
This was manageable to a degree; however, when the sleep problems began, this became unbearable and pushed our family to the breaking point. He would wake up at 2 a.m. full of vim and vigor ready to start his day, blissfully unaware his day wasn’t due to start for another six hours!
It would then take about four hours to get him back to sleep, usually on the sofa, to grab a final hour or two of sleep before daybreak. This quickly took its toll on both parents. This was happening about two weekdays out of the week, and strangely never on the weekends.
So we saw a sleep specialist who recommended melatonin and gabapentin, which we mixed into his sippy cup with a small amount of apple juice before bed. That was the end of his serious sleep problems, and there were no identifiable side effects. We were thrilled.
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Then the staff at his preschool and clinic began telling us he was anxious and disobedient—dangerously running away from his teachers and therapists, dancing on tables, and refusing to follow instructions. So we headed to a child psychiatrist, who after a couple of visits, prescribed guanfacine, a cognition enhancer.
We crushed up a quarter of a pill into a fine powder and mixed it into a warm eight-ounce bottle of apple juice. The strategy behind this was if it was warm, he’d drink the whole bottle at once. This lowered his anxiety; however, after beginning the medication, his appetite went to nearly zero. There was a short period where he would not eat anything we put out for meals and was surviving on juice and little else.
Soon we were back in the psychiatrist’s office asking for more help, and she added a third drug called risperidone, which lowers irritability and stimulates appetite. This was administered in the same way—crushed to a fine powder and added to a warm eight-ounce apple juice bottle.
This was the missing piece of the puzzle. Within the first week, he was back to his happy, regulated self and eating as close to a balanced diet as he ever had—scrambled eggs(!), pancakes, red grapes, cream cheese quesadillas, and French bread. We also have him in “food school” with a licensed feeding therapist twice a week. He’s been listening to directions, and his mood has continued to be great with no noticeable side effects.
Just recently, we were visiting with our neighbors and William was participating in a bike race with the two other boys—this was inconceivable at one point.
We will continue to monitor him for the most prominent side effect reported—weight gain. However, as of today, we feel he’s moving towards being 100 precent ready for Kindergarten.
Some tips I can give for parents considering medication:
- It’s highly individualistic—what works for one kid might not work for another as each kid has different issues and needs.
- Give the meds enough time to work. Don’t give up before the doctor is ready to.
- Know the difference between drugs that begin to work with the first dose and those that need to build up in the body before their effects begin.
- Be prepared to work through a rough patch at the beginning as your child adjusts to a new med.
- Follow the doctor’s advice as closely as you can and communicate with him/her as frequently as you’re able to.
Let therapists and teachers know what is happening so they can also be your eyes and ears.
This article was featured in Issue 106 –Maintaining a Healthy Balance With ASD