Many of our readers on PatientNextDoor have probably seen the movie Rain Man (1988, starring Dustin Hoffman and Tom Cruise, directed by Barry Levinson) or Forrest Gump (1994, starring Tom Hanks and Sally Field, directed by Robert Zemeckis.)
Let’s Go to the Movies
In Rain Man, the character of Raymond Babbitt was obsessive with the everyday things in his life (such as his underwear brand and which way his bed pointed) and was incapable of some basic human emotions and speech. However, he was gifted with amazing mathematical and memory skills.
The audience watched as Raymond’s brother Charlie (Tom Cruise) kidnapped him, dealt with all his peculiarities and in the end found love for the brother he hadn’t known he had.
Then there came Forest Gump. In this blockbuster movie, Forest (Tom Hanks) faces many trials in his life, beginning in early childhood. He is labeled a “dummy” by his school, bullied by other children and watched over carefully by his mother due to his low IQ.
At the end of the movie, Forest finds himself a father and having made his fortune by working hard as a shrimp boat Captain living in his mother’s house after her death.
Whether either movie shows the realities of what it is like to live with Autism or not, they are the enduring glimpses into the world of Autism Spectrum Disorder (ASD) that many people have ever gotten.
Movies like these, and the many others that have been made in recent times, help to expose to the world the trials and triumphs of those living with a type of autism spectrum disorder.
Today we will travel together and learn about autism and what it means to the lives of those most affected by it.
A Discussion on the Definition of ASD
Autism Spectrum Disorder can sometimes also be referred to as Autistic Spectrum Disorder and is made of up of three developmental disabilities that have been caused by a brain abnormality.
The National Institute of Mental Health (NIHM) describes autism spectrum disorder as follows:
“Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behavior. Although autism can be diagnosed at any age, it is said to be a “developmental disorder” because symptoms generally appear in the first two years of life.
According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a guide created by the American Psychiatric Association used to diagnose mental disorders, people with ASD have:
- A difficulty with communication and interaction with other people
- Restricted interests and repetitive behaviors
- Symptoms that hurt the person’s ability to function properly in school, work, and other areas of life”
Although ASD is a lifelong problem, many children with autism can be treated, and these treatments bring improvements in their symptoms to help them function better.
All children should be screened early in life, at ages 9, 18 and 30 months of age as early detection is vital to improving the quality of life for these youngsters.
The term spectrum is used to describe Autism because there is a wide range of ways in which it can be expressed. There is a variety of types of symptoms, and they can be very different regarding their severity.
Facts About Autism vs. Myths
Autism is not limited to any racial, ethnic or socioeconomic status. However, it has been diagnosed almost five times more in boys than in girls. There are an estimated 1 in 68 children that experience autism somewhere on the spectrum.
The disorder leaves kids, and later adults, having difficulty with communicating and interacting with other people. They also have restricted interests and repetitive behaviors that make it difficult to function within a social group such as school and work.
Below are only a few of the myths about Autistic people.
Myth. Autistic people aren’t friendly.
Fact: People living with autism often have a hard time understanding and acting on social cues and body language. They may seem shy or unfriendly, but, they are just unable to understand the nuances of friendship. Autistic people need and want relationships just like you.
Myth. People living with autism can’t feel emotions.
Truth. Just because a person lives with autism doesn’t mean they are not human. Of course, they have emotions, but they have problems expressing those emotions.
Myth. People living with autism are intellectually disabled.
Fact. Many people living with autism have exceptional abilities. Most have normal or even higher IQs and make great mathematicians, doctors, and even lawyers.
Myth. If you’ve met one person with autism, you’ve met how they all behave and think.
Fact. Remember, autism is a spectrum disorder. That means that different people with autism behave and think in a variety of ways. Like all humans, they are individual people and will have unique abilities and limitations.
Myth. Autism is caused by bad parenting.
Truth. In the mid-1900s there was a theory that stated that autism arose in infants because of a lack of emotional warmth from their mothers. However, this theory has been long overthrown and proven not to be true.
Vaccines and Autism—the Biggest Myth?
In 1998, a research paper appeared to show a link between Autism and the receipt of the combined measles, mumps, rubella (MMR) vaccine by infants. The article was written by Dr. Andrew Wakefield and published in the medical journal Lancet. Dr. Wakefield stated that the ingredients in the vaccine such mercury caused the disorder in children. The result was a panic among parents that continues to this day.
A journalist named Brian Deer investigated Dr. Wakefield and his methods and found many irregularities which showed that the paper was fraudulent. These irregularities included several undeclared conflicts of interest, that he had manipulated evidence as well as breaking many other ethical codes of conduct.
The Lancet partially retracted the paper in 2004, and finally wholly debunked the paper as fraudulent in 2010. The editor-in-chief Richard Horton went a step further and described the paper as “utterly false” and that his journal had been deceived into publishing it.
Later, Dr. Wakefield was found guilty by the General Medical Council of severe misconduct and in 2010 was taken off the Medical Register in the United Kingdom. Effectively, his license to practice medicine in the UK was revoked.
However, the damage to the trust parents had imparted to their pediatrician in the need to get their children vaccinated for MMR had been done. The rumor that getting your child vaccinated against the three potentially deadly diseases of measles, mumps, rubella caused autism made many parents either reluctant to get or to choose not to vaccinate their children.
Since then numerous studies including one done by Jean Golding and associates in 2018 and published in the Molecular Autism Brain, Cognition and Behavior in 2018 have shown that there are no adverse effects of prenatal or post-natal from mercury exposure even when mothers ate much fish (containing mercury) during pregnancy.
The fact stands that children are far more likely to die from preventable childhood diseases because they did not receive the vaccines against them than to develop autism.
However, the debate still goes on.
The Three Main Types of Autism Spectrum Disorder
Autism Spectrum Disorder is comprised of three different developmental disabilities. The three types of autism are Autistic Disorder (classic autism), Asperger’s Syndrome, and Pervasive Developmental Disorder.
Autism Disorder (Classic Autism) is what most think when they hear the term autism. With this type, children experience significant language delays with problems socializing and communication problems. Many with this form will also have an intellectual disability.
Asperger’s Syndrome is a somewhat milder form of autism for most. People living with Asperger’s may have social challenges and unusual behaviors or interests. Usually, they do not display problems with language nor do they typically have an intellectual disability.
The diagnosis of Pervasive Developmental Disorder (Not Otherwise Specified PDD-NOS; also called atypical autism) is given to people who meet some of the criteria for autism disorder or Asperger’s syndrome but do not exhibit them all. These folks usually mild symptoms and might only have some social and communication challenges.
The Statistics of Autism
According to the World Health Organization (WHO), 1 in 160 children worldwide has an autism spectrum disorder which breaks down to 1% of the world’s population.
7.6 Billion people are living in the world today, meaning that 76 million human beings living on planet earth today have some type of autistic spectrum disorder.
To break that down a little further, 3.5 million in the U.S., 13 million in India, and 230,000 people in Australia have some form of autism alone.
There is another disturbing statistic that must be mentioned here.
Autism in the children of the United States has increased by 119.4% from 1 in 150 to 1 in 68 cases, with an overall increase worldwide from 6-15% each year from 2002 to 2010. This makes autism the fastest growing health disorder of children in the world.
The even more disturbing fact about this alarming increase is that no one understands why it is happening, or even why autism occurs in the first place. Research is continuing, and hopefully, more will be found about ASD and better ways are found to treat it.
Societal Treatment of People Living with Autism
Around the globe, people living with a form of ASD are subject to discrimination and human rights violations. This translates into lack of access for these folks to the adequate services and support that they need.
Parents often find they have problems getting insurance coverage to cover the needs of their children. Even in countries that mandate national medical insurance, governments have a history of neglect when it comes to those children in their populations affected by an autism disorder.
Many countries have a horrendous stigma against those exhibiting the behaviors of autism. South Korea sees having a child with autism as a black mark of disgrace on their family and often opt to keep their autistic children hidden and refuse any attempts at a diagnosis. This maltreatment leaves helpless children without community support or medical treatment.
The Hopes and Dreams of Parents of Autistic Children
PatientNextDoor surveyed the members of our PND family who have children living with autism to find out their perspective on all different aspects of the disorder. The reason for exploring their feelings and thoughts is to bring a human sense to all the statistics and facts that have thus far been presented in this article.
First, autistic kids are just like children everywhere; they love playing video games, animals, coloring, fishing, swimming and rocking in their parent’s laps.
The parents we heard from were also understandably concerned with how their kids would be treated by society. They were concerned their kids would be outcasts.
They listed their greatest of their fears as that their children will be bullied at school, will get themselves into trouble because they do not understand social rules and have low self-esteem. They are also worried their kids won’t be able to study, work or have friends when they grow up and what will happen to them after they die.
Coincidingly, parents of autistic children expressed their hopes and dreams for their kids. They hope that their children will learn to cope with the challenges they face with autism and experience the love and acceptance of their community. They also want their children to grow up to live independently and take care of themselves while holding a meaningful job.
However, the biggest hope these concerned parents have is to see the eradication of autism from the world forever so that no other parents need worry and fuss over the things they do today.
Top Struggles and Issues Parents of Autistic Children Face
Children with autism have needs that go beyond the requirements of other kids. They have meltdowns, problems communicating what they need, and exhibit stubborn behavior. Parents also must bear the brunt of misunderstanding by people who either do not understand or wish to ignore the needs of autistic children and their parents.
These brave men and women have many daily struggles they must face when raising their kids.
For one, their children need and want constant attention and remaining patient can be a trial. Also, autistic children can throw significant tantrums when they do not get their way and have problems communicating what is wrong making the situation even more compound. These parents face overcoming eating problems and habits and listed eating food as a huge problem for them to overcome.
All these issues and struggles leave the parents feeling the parents of autistic children feeling tired, isolated and even exhausted at the end of the day.
These parents also stated there are impacts on their relationships with their partners, yet somehow the disorder seemed to make them stronger and closer.
The words these brave folks used to describe how they feel about being a parent of autistic kids tell it all.
- Proud at every achievement
What struck this author the most about this list is that overwhelmingly they used positive words to describe life with their kids.
When we asked them their regrets of being parents of autistic children their answers followed the same positive trend.
- Didn’t see signs and got therapy earlier
- None, it makes me feel good
These lists prove once and for all that love is more powerful than any disorder, and that no matter what the cost most parents see their kid’s as human beings are worthy of love, dignity, and respect.
Autism Doesn’t Only Affect Children
Children with autistic disorders grow up to be adults, and with the right treatment and support can lead independent and happy lives. That doesn’t mean they will not have problems, but it does say they can and do have families and careers.
Though adults living with autism might have problems working in groups and conversing with their boss and co-workers, they are highly capable at what they choose to do. A study found in The Frontiers of Neuroscience in 2016, found that people with autism are often more intelligent than others stating the following:
“The psychological, sociological, and economic causes of these findings are ambiguous, but the results, taken at face value and in conjunction with the vocational correlates of autism, support the hypothesis that the autism spectrum is associated in some manner with relatively high intelligence.” (Crespi, 2016).
This higher intelligence may be why you will find autistic adults in such professionals as Dog Trainer, Veterinarian, Computer Programmer, Software Scientist, Physician or Research Scientist.
Autistic adults may exhibit some unusual behaviors, but their talents at these careers are above par.
From the Mouth of Someone Living with Autism Today
We will finish our travels together by discussing an adult living with autism today, Dr. Mary Temple Grandin is a Professor of Animal Science at Colorado State University who consults the livestock industry on animal behavior.
This remarkable woman is one of the first people living with autism to share her insights into experiencing autism with the world. Dr. Grandin explains her autism spectrum disorder as such:
“Autism is a neurological disorder. It’s not caused by bad parenting. It’s caused by, you know, abnormal development in the brain. The emotional circuits in the brain are abnormal. Moreover, there also are differences in the white matter, which is the brain’s computer cables that hook up the different brain departments.” Mary Temple Grandin
Dr. Grandin understands her brain disorder; now it is up to society to learn about it as well.
Yes, living with autism is challenging, demanding and exhausting, but parents who live with these kids and later people who love them as adults recognize that they are unique in many other ways than having a brain disorder.
They are remarkable, unique and beautiful human beings.
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Disclaimer: The opinions expressed in this post are the personal views of the author. They do not necessarily reflect the views of PatientNextDoor. Any omissions or errors are the author’s and PatientNextDoor does not assume any liability or responsibility for them.