Although many parents and medical professionals see autism as a disorder without a cure, there's an increasing body of evidence to show that some type of recovery may be possible. As an individual with autism or a parent of a child with ASD, understanding the concept of recovery can be challenging. However, the latest research and expert advice can help make sense of this idea.
A Controversial Concept
It's rare to find the term "recovery" used in scientific studies or even most books about autism, and this is because the concept is very controversial in the medical community. According to an article in The Journal of Child Psychology and Psychiatry, even studies that directly focus on recovery almost never use that word to describe their research. This controversy exists for two main reasons.
Fear of False Hope
To any parent of a child on the spectrum, the idea of recovery may seem like the ultimate goal. However, even with the best intervention, only a small portion of diagnosed children will ever really stop meeting diagnostic criteria or be fully recovered. If parents see recovery as a possibility, they may feel that all children have this chance, and they may feel that they have failed if their child isn't among those who recover.
Uncertainty About Whether Recovery Is Possible
Until recent years, there have been very few studies demonstrating anything significant about autism recovery. Recent studies have begun to show that it may be possible, but many people are still skeptical. Additionally, there are many factors that can confound this type of research, including the validity of the child's initial diagnosis and the research methods used.
Defining Recovery
Many people wonder about how the concept of recovery is defined, and uncertainty about this definition may be another reason the word isn't used on a regular basis. In some cases, it may mean that a child no longer meets the diagnostic criteria for autism, but they may exhibit some of the symptoms in a non-clinical sense. In other cases, recovery may mean that the individual is now considered neurotypical, a term used to describe people who do not fall within the autism spectrum.
Betty Crea Davidson, a special education attorney and mom, believes that there isn't much a difference between being neurotypical and no longer meeting the diagnostic criteria. Her son, Atticus, was non-verbal and diagnosed with ASD at 28 months. Today, he is totally recovered, and she runs a non-profit organization to help other parents work with their children through her program, Apex Spectrum Guide.
"I'm not sure there's a distinction between neurotypical and not meeting the diagnostic criteria for autism - I think they're one and the same," she says. "My son does not struggle with any communication, behavioral, and social challenges. I would imagine that would apply across the board to anyone who is truly recovered or cured."
Recent Research About Autism and the Concept of Recovery
In the last few years, studies have examined whether some type of autism recovery is possible. These studies primarily focus on small samples of children and examine specific aspects of functioning. There have been mixed results.
Children with Optimal Outcomes Fall Within Normal Range
Published in the Journal of Child Psychology and Psychiatry in 2013, this study focused on 34 children previous diagnosed with ASD who had since recovered. Researchers defined an "optimal outcome" as a complete loss of ASD symptoms and no impairments in communication or social interaction. The study compared the functioning of these recovered individuals with corresponding peers still diagnosed with high functioning autism (HFA) and found that those who had an optimal outcome differed significantly from the HFA group and fell within the range of "normal."
Optimal Outcome Children Still Lag Behind Neurotypical Peers When Categorizing Objects
Another study published in The Journal of Autism and Developmental Disorders in 2013 compared children's abilities to categorize new objects in existing categories. Children with HFA and optimal outcomes both performed at a level below neurotypical peers, indicating that despite their high level of functioning, they still found this task very challenging.
Brain Activity of ASD Children Similar to Neurotypical Children After Behavioral Intervention
In a study published in the Journal of the American Academy of Child and Adolescent Psychiatry in 2012, researchers used EEG to compare the brain activity of previously diagnosed children to those who had never been diagnosed with autism. The study focused on the task of viewing faces and objects and involved 48 previously diagnosed children who had received significant behavioral intervention. The results found that the children diagnosed with ASD performed similarly to non-ASD peers after intervention.
One Parent's Story
"Even today, it's so difficult to remember the enormous grief I felt for the loss of the life I had hoped for my son in the wake of his autism diagnosis," Davidson says. "But I was also determined that no way was I going to let autism steal my child's chance to have the same life as anyone else. There would be no limits for my boy - everywhere I looked, I heard autism was incurable. I refused to accept that. I knew there had to be solution."
Davidson spent a huge amount of time working directly with her son and consulting experts in the field of autism. She found that she had excellent luck with Applied Behavioral Analysis (ABA), a system that can be very complex and challenging to implement effectively.
Today, after years of hard work, Davidson's son is fully recovered, and she hopes to share what she's learned through Apex Spectrum Guide. The program is designed to take some of the guesswork out of ABA, making the system more automated and user-friendly.
Davidson's Tips for Parents
After years of working with her son and helping parents in her role as a special education attorney, Davidson has had a lot of experience with autism, both personally and professionally. Her unique perspective as a professional and mom allows her to offer some important insights.
Know That All Children Can Improve
Although Davidson doesn't promise complete recovery for every child, she does believe that every child can make some type of progress. She says that even older children, those well past the early intervention window, can benefit from therapy and possibly even recover.
"I don't believe there is a clinical age window for recovery," she says. "With the right intervention, all children can make substantial progress in behavior, communication and cognition."
Follow Your Head, Not Your Heart
In her work with parents, Davidson has seen many people desperate to help their kids. Sometimes, they turn to unproven therapies that make empty promises.
"If we're honest, when you're heartbroken and desperate, you do anything, try anything, even things that have no science supporting it. You wind up putting your hopes into something that really doesn't help," she says. "Time ticks by and you lose precious opportunities where, if you were applying scientifically supported treatments, things would be so much different - so much better - for both you and your child."
Understand That Parent Involvement Is Essential
Davidson developed Apex Spectrum Guide to make parent involvement easier, and she firmly believes that it's a key component of progress and recovery.
"Parents are the single greatest hope for their child's recovery. I would even go so far as to say that without significant parent involvement, recovery is probably not possible," she says.
Make a Significant Difference for Any Child
There's still a significant amount of debate and controversy about the idea of recovery. Ultimately, however, whether or not autism recovery is a real possibility isn't as important as the knowledge that hard work, true parental involvement, and quality therapy approaches can make a significant difference for any child or individual on the autism spectrum.
