What Autism Awareness Means to Me

Dr. Robert Melillo

world autism awareness dayToday is World Autism Awareness Day and April is Autism Awareness Month. A few years ago this was seen by most people as a great step forward as an effort to understand autism. The numbers of people diagnosed with autism have significantly increased over the past 3 decades going from 1 in 10,000 to now approximately 1 in 40. I showed in my 3rd book that the rise of this number was not due to just increased awareness; it mostly represents new cases that did not exist in the past.

Despite this dramatic increase in research funding to understand autism – this increase has been relatively very low. So efforts were made to raise awareness of autism and to bring attention to the need for money for research and for the need for coverage of services for families that wish to pursue them. This would seem like a good thing, but recently many people in the autism community have found these efforts offensive to them, and they don’t feel like there is anything “wrong” with a rise in autism and they are offended by any effort to prevent autism. Understandably, they feel like if someone is calling them an “epidemic”, or saying they want to eliminate or prevent autism, they feel like they are being attacked. They also feel like people are against people with autism and want to remove their right to exist.  They are calling for acceptance and that people should just accept that there are people with differences and autism is one of them.

It is not a disorder, it is a different human trait. Again this is understandable and it is important to understand that part of the autism trait is to take things extremely literally, and reading into the larger meaning of text and words is not something that people with autism do well with. So when they read that they are an “epidemic” or that we need to stop or understand the increase in autism, they are offended and feel attacked and in danger. They feel the world wants to get rid of autistic people, and of course, this is not the case but we can see how they may see that and feel that way. They have many exceptional traits and I have argued that with autism we have people that do have an extreme version of a normal human trait and that trait is Left Brain Dominant cognitive style. Most people with autism have extreme and even genius-level left brain skills: a distinct memory for details, math, science, technology, fine art, perfect pitch, etc. But there is an unevenness of skills, where the right brain skills are not quite as strong and balanced, and can even be very delayed and deficient. I understand all of this and I like other clinicians and researchers have dedicated our lives to understanding autism and providing any assistance we can.

Over the past year or so, my main focus has been trying to provide some assistance to children with autism that are non-verbal. My book Disconnected Kids is becoming more popular around the world and it has been translated into about 10 languages. Parents reach out to me to meet with them and see their children as I travel around the world and they come to see me in my office in NYC. I also have been working on perfecting my approach to helping these children improve their non-verbal and verbal speech techniques and the results have been quite remarkable. I fully understand and respect that people with autism just wants to be accepted. I get that and they have the right to do or believe anything they want. But when it comes to children that can’t speak, the families are desperate to try and help them and they have that right as well.

The argument of acceptance revolves around the concept that autism is something that can’t be helped or changed- that it is a genetic difference and nothing can be done to change that. Therefore acceptance and understanding is the only choice. However, there is significant research to argue against the idea that autism is the result of genetic mutations alone and that it can never be changed. I believe that acceptance for any difference is a given but also should come when everything else fails and no change is possible. I have worked with many kids and we have created tremendous change- about 50% of the nonverbal kids I have worked with over this past year are now starting to speak and this is life changing for the child and the family. But this is not for everyone and everyone has the right to choose what they want for themselves or their child.

I believe everyone with autism should be accepted as they are and loved for who they are. I also believe that a person or family with a child with autism who wants to try to change that, that they have that right as well and for those people, I will continue to do research and I will continue to help anyone who reaches out to me. I think it is imperative to know the facts about autism and what is actually happening in the brain as far as we know. There is no damage, there is no clear injury or pathology in the brain of someone with autism. In most cases, there is not any clear cut genetic mutation or physical damage to genes in any way. There are some genetic differences or an “autism trait” which is just an extreme version of a normal human trait, it is a difference, not a mutation.

In the brain, there are areas that are “hyperconnected” and areas that are “underconnected” which seems to relate to the imbalance of skills that we see. Our research in our lab and others have shown that there are fewer connections between the two hemispheres of the brain and that the right side is underdeveloped and the left side seems to be hyperdeveloped. The right side of the brain regulates social behavior along with many other things and people with autism often have genius level left brain skills. Should someone choose to, the brain can be changed, have more balance, and integration and communication can be created or improved between the networks of the brain. There is nothing preventing this from happening in the vast majority of people with autism or any other similar situation such as ADHD, Dyslexia, Tourettes, etc. There is also a decent amount of research showing that even in nonverbal autism, some kids can be completely recovered. So the narrative that autism is not something that can be changed or altered in any way is false, and I do believe we want to openly accept people with autism, but for people who would like to explore the possibility of change that is their right as well.

This is the type of awareness I hope we bring to autism this year and this month.

And also, below are three important articles I think everyone should be familiar with before jumping to conclusions about what is or isn’t possible in autism.

Is it possible to recover from autism? New research says yes, but how to spark recovery remains a mystery, Jennifer Richler on July 1, 2013
Can children with autism recover? If so, how? Molly Helt et al. in Neuropsychology Review, Vol. 18, No. 4, pages 339–366; December 2008.
Optimal Outcome in Individuals with a History of Autism. Deborah Fein et al. in Journal of Child Psychology and Psychiatry, Vol. 54, No. 2, pages 195–205; February 2013.