Getting Rid of Autism

The idea of getting rid of autism began in 1987, after a pioneering researcher and scientist in Applied Behavior Analysis "A.B.A", named Lovaas, published a study he conducted on 19 autistic children whose ages ranged from 3 to 4 years. In this study, each child received forty intensive hours of training per week. The researcher also included in his study 19 other autistic children for comparison, giving them ten hours or less of non-intensive training per week. The results of this researcher's study indicated that half of the children who received forty hours of training completely got rid of autism, while not a single child from the less-trained group got rid of it. His study faced criticism and angry reactions due to some methodological flaws and his treatment method, which also included the use of sharp sounds and noise, slaps, and even electric shocks.

After Lovaas's study, a great deal of research was conducted to examine the likelihood of children getting rid of autism. The results of these studies pointed to significant progress in children after receiving intensive training.

A few similar studies claimed that some children were able to get rid of autism, but criticism also surrounded their findings for several reasons, including that the children had received an incorrect diagnosis from the beginning.

In the period from 2012 to 2014, two standardized and methodologically very robust studies were published, with results supporting the validity of the theory that some cases possess the potential for significant progress that might help them move outside the diagnostic framework and criteria—getting rid of autism—though in very few children.

The first study was conducted by a clinical/neuropsychologist named Deborah Fein from the University of Connecticut. In this study, Fein tracked 34 autistic children and found that these children had lost the criteria for receiving an autism diagnosis over time!

The second study was published in May 2014, when another group of researchers, led by Catherine Lord, who is well known in autism diagnosis and assessment and directs a large autism center in the Department of Medicine at Weill Cornell Medical College, published a study tracking the records of 85 youths who had received the diagnosis when they were children. Catherine and her team found that around 9% of these individuals no longer met the diagnostic criteria for autism.

Geraldine Dawson, a psychologist and researcher in the Department of Psychiatry at Duke University and the Duke Institute for Brain Sciences, says: "Those who work closely with autistic children, like us, know of the existence of such cases." She and her colleagues estimated that 10% of the autistic children they had personally worked with had lost autism symptoms over time!

Here, scientists and researchers point out that what is called autism may in fact be a group of different conditions that have wide genetic and environmental differences from one another, but produce similar symptoms. If this explanation is correct, it may help us understand the very significant progress made by some autistic children.

Catherine Fein says: "At present, even though such results are merely basic information, despite my field of work and my interaction with autistic children for 40 years, I cannot predict which of these children is capable of moving beyond the diagnostic criteria or even improving. There is still much that we do not understand."

In Fein's study, some of the children who moved outside the diagnostic criteria had received more hours of Applied Behavior Analysis therapy and at an earlier age than others who continued to meet the diagnostic criteria. By contrast, some of those children who also surpassed the diagnostic criteria had received no intervention at all in the first place!

Some researchers reject the idea that getting rid of autism is the ultimate end and core goal. Ari Ne'eman, president of the Autistic Self Advocacy Network—a national group run by and directed for autistic adults to advocate for themselves—says: "Autism is not a disease in need of a cure." He also says that it is very important to remember that the defining traits of autistic people, which may seem strange to others, are actually very valuable and part of their identity.

Here, Ne'eman and his team support the necessity of early intervention that improves communication and helps develop independent cognitive and social skills, but they are deeply troubled by the focus on trying to get rid of autism or erase it entirely.

Ne'eman wonders: why don't we accept autism? Why shouldn't our goal be to help autistic individuals live independently, have their friends and jobs, and be active, contributing members of society?

Why do hand-flapping or even a lack of eye contact matter more to us than the high abilities some of them have in computer programming, mathematics, assembly and design, and even music? What is the evidence that those who moved beyond the diagnostic criteria are more successful or happier than those who remain within them?

Ne'eman continues: "We do not believe it is possible to radically rewire our brains to change how we think and interact with the world." "Even if that were possible, we do not believe it would be ethical." He and his team claim that autism is just like left-handedness; writing with the left hand, merely a difference and not a deficit or something pathological.

In 1993, a man named Jim Sinclair wrote an open letter to parents of autistic children, sparking what would become known as the neurodiversity movement ("neurological differences, if correctly translated"). Sinclair wrote to them about autism: "It colors every experience, every sensation, every perception, every emotion, every encounter, every aspect of their existence. You cannot separate autism from the person—and if you could, the person you were left with would not be the same person you started with. . . . Therefore, when parents say: 'I wish my child were not autistic,' what they are really saying is: 'I wish my autistic child did not exist in the first place, and that what I had was a different, non-autistic child.'"

In reality, however, many mysteries remain surrounding autism. Catherine Lord says: "I see many parents of two-year-old autistic children who have heard stories about some children outgrowing an autism diagnosis," and they always tell us: "I want my child to be one of those children." We always remind them that such children who surpass the diagnostic criteria for autism are only a few. She also asks parents to focus on helping their child reach their maximum potential, regardless of societal rejection and lack of awareness. She says: "When you focus more on 'achieving perfection,' you hurt your child." It is good to hope, but do not focus on that hope so much that you lose sight of the child standing right in front of you.

And I, the translator of the article and the mother of a very sweet autistic child, urge all fathers and mothers toward acceptance and limitless support. The answers are still vague, and the boundaries of knowledge in the field of autism spectrum disorders remain very narrow. Always remember that we are their only army, and that our children are a blessing—and what a blessing! Accepting them is part of accepting ourselves. The greatest thing we can give our children is love and contentment with them and in them; to be able to accept their differences.

Close the windows of confusion and open the doors of contentment and love. And because I understand so well what it is like to be in isolation from the entire world while thinking about a piece of your heart walking upon the earth, I also encourage you to seek help from specialists to receive a diagnosis or early intervention through the methodology of Applied Behavior Analysis. Do not lose hope, and do not stand unable to take steps; with love and patience, boundless happiness will blossom in your hearts and the hearts of your children.

You are always in my prayers.

May you always be well.

Source

Originally published in Arabic. This English version was produced with AI-assisted translation; the Arabic original remains the reference.