The first is that I am not a medical doctor. I am not the person to give advice on specific pharmacological treatments.
The second is that I am not anti-medication. I know from direct experience that pharmacological interventions can be life-changing and — literally — life-saving for individuals and their families.
So why am I writing an article on medications and the treatment of autism spectrum disorders? Well, simply put, we have a lot of medicated kids out there. As a clinician who has worked collaboratively with medical professionals — including psychiatrists, pediatricians, and General Practitioners (GP) — I have gained some insight from my experience that I think could help a parent wrestling with the decision as to whether or not their child needs medication.
First things first: it is important for parents to know that there are no medications that can cure autism or treat the core impairments of the syndrome. Only two medications — Risperdal (3) and Abilify (4) — have been approved by the FDA for the treatment of aggressive, self-injurious or rage behaviours in individuals with ASD. All other medications are prescribed “off-label” for individuals on the spectrum.
Despite this, studies indicate (1,2) ( that a whopping percentage—about half–of people with autism take psychoactive medications. The most commonly prescribed, antidepressants and antipsychotics, are taken at a rate of roughly 10% higher (5) than in the general pediatric population.
Contrast that with this figure: about 3% of children with autism in Ontario, Canada are enrolled in the government-funded intensive ABA therapy program (this can largely be credited to the long waitlists and strict eligibility requirements for the intensive intervention program. Anyone can set up a doctor’s appointment and walk away with a prescription in hand. Accessing programs such as the intensive behavioural intervention might involve waiting for years on a waitlist – only to find out your child’s symptoms aren’t severe enough to get them in the door). In fairness, this figure doesn’t include the many children who receive ABA-based services in other settings, such as the school. But still, my point stands: even though there are no medications that “cure” ASD, and ABA-based therapy has been endorsed as an effective treatment by both the American Academy of Pediatrics and the American Medical Association, there are far more individuals with ASD receiving pharmacological treatment than ABA-based intervention.
These high rates of medicating aren’t necessarily a bad thing. But don’t you think we should be talking about it?
Here’s my advice, gleaned from my years of clinical experience, for any parent considering pharmacological treatment for their child with autism.
1. Be mindful about what your reasons for seeking pharmacological treatment
You already know there is no pharmacological intervention that can cure your child’s autism (believe me, if there were, your doctor would have prescribed it for you a long time ago!). So think about what you want your child to gain from taking medication.
Is it that you want her to sleep better?
To stop banging her head?
To be less anxious?
These are all valid reasons to consider pharmacological treatments. But don’t forge ahead blindly. Decide what you are trying to achieve, make your goals for treatment as specific and realistic as possible, and communicate them clearly to your prescribing physician.
2. Make your decision in collaboration with an experienced physician
Most psychoactive medications — about 80% – are prescribed by GPs. Although some GPs have extensive experience in psychopharmacological treatment and follow-up, not all do! If you don’t feel confident in your physician’s experience in this area ask for a referral to a psychiatrist or developmental pediatrician who specializes in the treatment of autism spectrum disorders. Medical treatment of any sort is serious stuff. This is the time to bring in the big guns and access the best, most experienced professionals you can find.
3. Take data
When a behavior analyst tries a new intervention, we take data to make sure it’s working. Trying a new medication is no exception. You were reflective about what you wanted to get from the medication, as we discussed in #1, right? So now take data to see if you’re getting what you hoped for. I have often had the experience, when I ask a family how a pharmacological treatment is working, that I get vague, non-specific answers like “well, he seems a bit more focused most of the time”. It’s time to take hard data to see if the medication you selected is having the desired effect.
4. Perform regular medication reviews
Here’s where your data comes in handy: you can use it to make sure that your child’s medications and dosages are optimized. Schedule regular medication reviews—at least once or twice a year—with your doctor to look at the data and decide if your child is reaping the maximum benefit from the medical treatment.
5. Be confident in your choices
No parent makes the decision to put their child on medication lightly. So if you decide to pursue pharmacological treatment, be confident in your decision. If you followed the advice in #2, and consulted the best experts you could access, then you are relying on the best scientific knowledge of the medical community and making the right choice for your child. But the ONLY people that should be making this decision are you and your child’s medical team.
Don’t feel pressured by anyone else—teachers, relatives, neighbours—to put your child on medications if you and your doctor don’t think it will benefit her. Remember my first disclaimer? They’re not medical professionals either!! You know your child best. The choice to medicate is a serious decision to be made by you and your child’s medical team.
What have your experiences been with medications and your special child? Share in the comments below!
1) Aman, MG1, KS Lam, and A. Collier-Crespin. “Prevalence and patterns of use of psychoactive medicines among individuals with autism in the Autism Society of Ohio.” National Center for Biotechnology Information. U.S. National Library of Medicine, Oct. 2003. Web. 15 July 2014.
2) Langworthy-Lam, KS, Aman, MG and Van Bourgondien, ME. “Prevalence and Patterns of Use of Psychoactive Medicines in Individuals with Autism in the Autism Society of North Carolina.” National Center for Biotechnology Information. U.S. National Library of Medicine, n.d. Web. 19 July 2014.
3) Moynahan, Megan. “FDA Approves the First Drug to Treat Irritability Associated with Autism, Risperdal.” FDA Approves the First Drug to Treat Irritability Associated with Autism, Risperdal. USFDA, n.d. Web. 19 July 2014.
4) Waknine, Yael. “FDA Approves Aripiprazole to Treat Irritability in Autistic Children.” Medscape Nurses. MedScape, 24 Nov. 2009. Web. 19 July 2014.
5) Delate, T1, AJ Gelenberg, VA Simmons, and BR Motheral. “Trends in the Use of Antidepressants in a National Sample of Commercially Insured Pediatric Patients, 1998 to 2002.” National Center for Biotechnology Information. U.S. National Library of Medicine, 1 Apr. 2004. Web. 19 July 2014.