By Rebecca Godfrey, Associate Clinical Director, Ph.D., BCBA-D, Kinark Child and Family Services
Jon Roland, Manager of Clinical Services, Central East Autism Program, Kinark Child and Family Services
Entering the words autism and treatment into google.com provides you a list of more than 50 million links. A list of things that you may or may not have heard of, a list of things that is far too long. There is so much information out there and so much of it is confusing, convincing, controversial and emotional.
There is no doubt it can be difficult to separate the unhelpful treatments, sometimes even unusual treatments, from the proven ones. The treatment choices most likely to work for a child are those that are evidenced-based (i.e., scientifically-supported) and can be individualized for a child’s specific needs. The treatment choices least likely to work are those based on poor evidence and will likely waste time, money and opportunity. The wrong treatment may also be harmful for your child or interfere with the right treatment. Parents should know what questions to ask so they can decide if they should proceed with a treatment or stay away from it. They need to look for common scams used to trick parents into trying unhelpful treatments.
Autism has become an industry with new service providers popping up all the time. Some provide quality evidence-based services that may help your child. Some providers are well-meaning, completely sincere, and of no benefit to your child. Others still are intentionally deceptive, trying to promote the newest non-scientific, fad treatment. Vulnerable parents, desperate for a solution, are often willing to try anything. Warnings signs to look for include promises that the treatment will have an immediate effect, that it will cure the child of autism, or claims to work for all children with autism. If evidence that the treatment works is mostly from testimonials or if the treatment provider claims that doctors or scientists don’t want you to know about this treatment, parents should treat these as warning signs.
Parents also need to know signs that a treatment is appropriate. Two signs to look for are the treatment does not claim to be a cure or a quick solution and the treatment is tailored to your child’s strengths and needs. It should also be delivered by and supervised by professionals who can show they are qualified. If those supervising the treatment don’t have professional credentials (e.g., Board Certification as Behaviour Analysts), then parents should be cautious.
A treatment worth pursuing should have scientific evidence that does not come from the treatment provider’s personal research, but rather from scientific journals reviewed by other professionals. A worthy treatment should collect data before and during treatment on skills that are measurable and observable. As a parent, you should be able to be involved in the treatment for developing treatment goals, observations and potentially treatment delivery. If a treatment does not involve parents beyond paying for it, then this is a sign to look at other options.
If your child is already involved in a treatment and you are not sure whether you should continue, then you should ask the treatment provider to show evidence that what they are doing is helpful. As a parent you should be able to say prove it! The provider should have actual data for you to look at that shows you how the treatment is working and the data should clearly show that what they are doing is causing the change in your child. If the treatment involves medication, dietary changes, vitamins, or supplements, your family physician should be consulted to ensure he/she agrees with the recommendation and/or will prescribe the treatment. Your child’s physician should also provide monitoring of your child during such a treatment.
It’s important to remember that if your child ends up in the wrong treatment, they could miss the developmental window where they have the potential to make the most gains with the right treatment. As a parent, doing your homework on treatment options will be your child’s best defence against the wrong treatment and best chance to put them on the path to getting the right treatment.
In the attached link you will find a checklist that may help you decide whether or not to pursue a particular treatment. It is divided into three sections. Green flags indicate signs that a treatment is evidence-based, yellow flags indicate you should proceed with caution, and red flags indicate a treatment should be avoided.
The Central East Autism Program (CEAP) also recommends several other resources which include:
- The Complete Guide to Autism Treatments: A parent’s handbook: make sure your child gets what works! (Freeman, 2007 – available in the CEAP parent library)
- Controversial Therapies for Autism and Intellectual Disabilities: Fad, fashion, and science in professional practice (Foxx & Mulick, 2016)
- The Association for Science in Autism Treatment’s website
- The National Autism Center’s guides and reports including “A Parent’s Guide to Evidence-based Practice and Autism”