What is Autism?
According to the Centers for Disease Control and Prevention, Autism is defined as:
Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.
A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called autism spectrum disorder. (http://www.cdc.gov/ncbddd/autism/facts.html)
Here is a great video that explains this in further detail:
Here is a Podcast that is also quite informative:
Signs and Symptoms of Autism Spectrum Disorders:
According to the National Institute of Health, there are several different presentations of Autism Spectrum Disorders because it is a spectrum – what is true for one child with ASD is not necessarily true for another child with ASD. There are commonalities across the spectrum that help define the spectrum. They include:
The hallmark feature of ASD is impaired social interaction. As early as infancy, a baby with ASD may be unresponsive to people or focus intently on one item to the exclusion of others for long periods of time. A child with ASD may appear to develop normally and then withdraw and become indifferent to social engagement.
Children with an ASD may fail to respond to their names and often avoid eye contact with other people. They have difficulty interpreting what others are thinking or feeling because they can’t understand social cues, such as tone of voice or facial expressions, and don’t watch other people’s faces for clues about appropriate behavior. They may lack empathy.
Many children with an ASD engage in repetitive movements such as rocking and twirling, or in self-abusive behavior such as biting or head-banging. They also tend to start speaking later than other children and may refer to themselves by name instead of “I” or “me.” Children with an ASD don’t know how to play interactively with other children. Some speak in a sing-song voice about a narrow range of favorite topics, with little regard for the interests of the person to whom they are speaking.
Children with characteristics of an ASD may have co-occurring conditions, including Fragile X syndrome (which causes mental retardation), tuberous sclerosis, epileptic seizures, Tourette syndrome, learning disabilities, and attention deficit disorder. About 20 to 30 percent of children with an ASD develop epilepsy by the time they reach adulthood. (http://www.ninds.nih.gov/disorders/autism/detail_autism.htm).
Other symptoms in a child may include, but is not limited to, the following (Courtesy of The Mayo Clinic http://www.mayoclinic.org/diseases-conditions/autism/basics/symptoms/con-20021148 ):
- Fails to respond to his or her name
- Has poor eye contact
- Appears not to hear you at times
- Resists cuddling and holding
- Appears unaware of others’ feelings
- Seems to prefer playing alone — retreats into his or her own world
- Doesn’t ask for help or request things
- Doesn’t speak or has delayed speech
- Loses previously acquired ability to say words or sentences
- Doesn’t make eye contact when making requests
- Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech
- Can’t start a conversation or keep one going
- May repeat words or phrases verbatim, but doesn’t understand how to use them
- Doesn’t appear to understand simple questions or directions
- Performs repetitive movements, such as rocking, spinning or hand-flapping
- Develops specific routines or rituals and becomes disturbed at the slightest change
- Moves constantly
- May be fascinated by details of an object, such as the spinning wheels of a toy car, but doesn’t understand the “big picture” of the subject
- May be unusually sensitive to light, sound and touch, and yet oblivious to pain
- Does not engage in imitative or make-believe play
- May have odd food preferences, such as eating only a few foods, or craving items that are not food, such as chalk or dirt
- May perform activities that could cause self-harm, such as headbanging.
This is where things can get a bit tricky. Depending on where you live in the world, and (consequently) the services that are available to you, this factor should determine your course of action if you suspect your child may have some form of Autism. Early intervention is key, and as a parent I cannot overemphasize how deeply I regret not intervening for my child sooner. Here are a few of the “Red Flags,” to look out for, and if you see them, I highly recommend asking your child’s pediatrician or physician. Your local physician should be familiar with the local process of getting your child thoroughly evaluated for any developmental delays he or she may have. No matter where you live in the world, a safe bet is to start with your childs’ doctor.
The following are “Red Flags,” courtesy of The Mayo Clinic (http://www.mayoclinic.org/diseases-conditions/autism/basics/symptoms/con-20021148). You should definitely be concerned about your childs’ development if your child:
- Doesn’t respond with a smile or happy expression by 6 months
- Doesn’t mimic sounds or facial expressions by 9 months
- Doesn’t babble or coo by 12 months
- Doesn’t gesture — such as point or wave — by 12 months
- Doesn’t say single words by 16 months
- Doesn’t say two-word phrases by 24 months
- Loses previously acquired language or social skills at any age
That being said, every child develops on their own timeline, and there are countless causes for developmental delays. These can include physical illness, neurological development, genetic predispositions, genetic mutations, psychological welfare, family or socioeconomic factors, or simply a child growing on their own timeline. These are simply guidelines to be mindful of. Not every child with a developmental delay has autism, however as both the parent of an autistic child and as a medical professional I recommend anyone with concerns about their child’s development to discuss it with their pediatrician. If you feel as though you are being “blown off” or “talked down to,” don’t hesitate to get a second opinion. As a parent it is always okay to ask “why?” Even if you don’t get an exact answer, at least you have your pediatrician pondering the question.
Here is the current diagnostic criteria required for a diagnosis of Autism, according to the DSM V:
There is currently no cure for Autism. I cannot say that enough! Unfortunately, while there is no cure for autism, there is a host of charlatans promising unsubstantiated, dangerous, and occasionally abusive therapy options. In the world of my own High Functioning (HF) kiddo, in regards to a treatment that is based on the idea of using bleach as an enema to “cure ASD”, my son said, “That is a sure way to ‘cure’ autism. If you kill the child, the autism definitely goes away!” While his response was quite witty, he has a valid point. Please, as both a medical profession and the mother of an amazing HFA kiddo: please do not buy into any of these so-called miracle cures. I do know that your heart is in the right place and that you want to do everything for your child, but instead of risking it all on a false claim, I implore you to invest your energy into a therapy that has some evidence to support it.
There are countless evidence based treatments and therapies, which I will explore in great detail here at MyPuzzlingPiece, which have proven to be extraordinarily helpful in my own experiences with Autism. Your job as a newly diagnosed ASD parent can be summed up in one word: advocacy. You are now your child’s voice, use it wisely and powerfully.
The Centers for Disease Control and Prevention says the following about various autism treatments:
There is currently no cure for ASD. However, research shows that early intervention treatment services can improve a child’s development. Early intervention services help children from birth to 3 years old (36 months) learn important skills. Services can include therapy to help the child talk, walk, and interact with others. Therefore, it is important to talk to your child’s doctor as soon as possible if you think your child has ASD or other developmental problem.
Even if your child has not been diagnosed with an ASD, he or she may be eligible for early intervention treatment services. The Individuals with Disabilities Education Act (IDEA) says that children under the age of 3 years (36 months) who are at risk of having developmental delays may be eligible for services. These services are provided through an early intervention system in your state. Through this system, you can ask for an evaluation.
In addition, treatment for particular symptoms, such as speech therapy for language delays, often does not need to wait for a formal ASD diagnosis (http://www.cdc.gov/ncbddd/autism/facts.html).
I feel it’s important to point out the fact that certain children need not wait for a formal ASD diagnosis to begin receiving treatments, as often the formal evaluation/diagnosis process can seemingly take awhile. So again, please consider earliest intervention that is feasibly possible for you and your family.
Here is a great guide to evidenced-based autism intervention. Interventions(1)
When my son was first diagnosed with Autism, I was provided a copy of “Life Journey Through Autism: A Guide for Military Families,” written by the Southwest Autism Research & Resource Center, or SARRC (this booklet can be downloaded here: militaryguide) I found this booklet to be immensely helpful. In the book, it is explained the difference between “evidence-based” and “complimentary” treatments. The following are a list of the most common evidence-based treatments:
- Applied Behavior Analysis, or ABA. ABA is an intensive, evidence-based approach to early intervention. Children usually work up to 40 hours per week with a trained, ideally certified, professional with a Board Certified Behavior Analyst (BCBA) certificate. This therapy will be discussed in great detail in later posts.
- Developmental Approaches. These approaches look at the whole child and the family, and guide other treatments, such as speech and language, education, occupational therapy, and behavioral services, so that the entire team is working toward developmental process.
- Speech and Language Therapy. Communication challenges are at the heart of an autism spectrum disorder and may contribute to behavior problems. Including a speech/language pathologist (SLP) on your child’s team may help improve his or her communication skills.
- Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH). TEACCH is a structured teaching approach based on the idea that the environment should be adapted to the child with autism, not the other way around.
- Picture Exchange Communication System (PECS). One of the main areas affeted by autism is the childs ability to communicate. PECS helps get basic language underway and helps provide a way of communicating for children who do not talk.
- Occupational Therapy (OT): Children with autism may benefit from working with an occupational therapist (OTR). An occupational therapist is a trained and licensed healthcare professional who collaborates with the family, the individual (when appropriate), and the intervention team to set intervention goals in the areas of activities of daily living (e.g. dressing, self care), instrumental activities of daily living (e.g. use of a computer, care of personal belongings), education, work, play, leisure, and social participation.
- Physical Therapy (PT): Children with autism often may have challenges with physical coordination and gross motor skills. A physical therapist will design a regimen that will help children with autism develop muscle strength and physical fitness while at the same time addressing issues related to gross motor coordination and skills.
Complementary Therapies: According to SARRC, “Complementary therapy generally refers to those interventions or treatments that differ from conventional treatments like applied beehavior analysis or bio-medical therapies and they may be used to complement these more traditional therapies” (SAARC, 21). Some Complementary treatments available to children with ASD include, but are not limited to:
- Animal Therapy
- Art Therapy
- Auditory Integration Training
- Craniosacral Therapy
- Music Therapy
- Play Therapy
- Vision Therapy
As a final note, I would like to reinforce the idea that there is currently no cure for autism, but there are therapies that can prove very helpful for children on the spectrum. It is our job as our children’s advocates to thoroughly evaluate the evidence regarding any treatment to verify it will be what is best, and safest, options for our children. Please do not hesitate to ask as many questions and interview as many specialists as you feel necessary. The following is a list of questions provided also from SARRC that is a helpful guide when considering various autism treatments:
- What benefits can we expect from this therapy?
- How much time is required to see progress?
- Are there any risks associated with this therapy?
- Could the therapy interact favorably or unfavorably with conventional treatments?
- Will the therapy interfere with the child’s daily treatments/activities?
- How long will the child need to undergo treatment? How often will his/her progress or plan of treatment be assessed?
- How is progress measured?
- What type of equipment or supplies are needed, and what will they cost?
- Are there any conditions for which this treatment should not be used?
- Do you have any current or previous clients who would be willing to talk with me?
- Do you make data-driven decisions about treatment?
- May I come and observe at your facility in advance of beginning treatment for my child? (Due to confidentiality concerns, this may not always be possible)
For more information on safe, evidence-based treatments for autism, you can find a PDF file of the National Standards Report here: http://www.nationalautismcenter.org/pdf/NAC%20Standards%20Report.pdf
Living With Autism: A Question of Prognosis
There is great divide within the Autism community right now. Does Autism need to be cured? The idea of a “cure” implies that Autism is a “disease.” On one side of the divide is those that feel strongly that autism is, in fact, a disease that is plaguing our generation and the generation of our kids; on the other side of the divide is a deep appreciation for the neurodiversity that autism brings with it.
On the day when my son was formally diagnosed, I felt like a bomb was dropped into my lap. I felt like all my dreams, hopes and aspirations were being stolen from me, and I was finally being forced to accept that maybe he wasn’t going to “grow out of it.”
It was, admittedly, an incredibly big pill to swallow. He is my only child, my pride and joy, and my very best friend. How could he be anything other than perfect?
The answer is simple: nobody is.
We all have our individual strengths and weaknesses. I say that not to downplay your challenges with autism, but rather to encourage you as a fellow ASD parent. After discussing the topic in depth for countless hours with countless parents, I have found my place on the divide, and I would like to make this case to you, in hopes to inspire you and lift your spirits.
At first it will feel like the end of the world to you. It has to: the term “autism” brings up images of Dustin Hoffman in the movie “Rainman” and other negative connotations, and as you adjust to life “officially” on the spectrum, there is a grieving process we as parents must go through. As with any type of grieving process, there is no limit to the time it takes you to grieve. As you dig into the internet to try to learn more about your child’s diagnosis, you will stumble across countless articles and videos that will terrify you. I beg you to consider the fact that many of the organizations that are producing these articles and commercial-like videos are doing so to raise money for their organization (not necessarily autism in general), and do so by making autism seem so much worse than it is. A good example of this would be the atrocity of a commercial created by Autism Speaks called “I am Autism” click here: https://www.youtube.com/watch?v=8mycxSJ3-_Q.
I am saddened to report that this was the first autism video I watched as a newly diagnosed parent, and I was horrified. “It’s going to bankrupt me and destroy my marriage?”
As time went by, I realized that my child’s behavior wasn’t new or different. It wasn’t any more intolerable than it was before the diagnosis. The only thing that changed was a name. I then realized that I did not particularly agree with the perspective presented in that video and that I would not let autism destroy my happiness.
As time has progressed, I have learned that keeping my thoughts positive helps to keep a constructive outlook on this whole process, both for me and my child. I try to focus on the incredible person my little boys is: to see him, not just his autism. I also reflect on the fact that many of the greatest minds in the history of our world we now know likely were on the spectrum. Some of my favorites include Emily Dickinson, Albert Einstein, Mozart, Thomas Jefferson, Michaelangelo, Isaac Newton, Nikola Tesla, and countless others. For an interesting list, visit this wikipedia site: http://en.wikipedia.org/wiki/Retrospective_diagnoses_of_autism.
So, fellow ASD parents, I encourage you to stay positive. Focus on the incredible things your child will do. Celebrate the milestones your child accomplishes (no matter how small, or how “behind”). One thing I find myself repeating often is “slow progress is still progress.” Be kind to yourself, and realize that this is a journey, and try to focus on your many, countless blessings.
And if you ever need a friend, I’m just an email away.
Centers for Disease Control and Prevention: Autism. 2014. http://www.cdc.gov/ncbddd/autism/index.html
The Mayo Clinic: Autism Basics. 2014. http://www.mayoclinic.org/diseases-conditions/autism/basics/definition/con-20021148
National Autism Center: The National Standards Report, 2009. http://www.nationalautismcenter.org/pdf/NAC%20Standards%20Report.pdf
National Institute of Neurological Disorders and Stroke: Autism Fact Sheet. 2012. http://www.ninds.nih.gov/disorders/autism/detail_autism.htm
Southwest Autism Research & Resource Center: Life Journey through Autism: A Guide for Military Families, 2010. http://www.researchautism.org/resources/reading/documents/militaryguide.pdf
Wikipedia: Retrospective Diagnosis of Autism, 2014. http://en.wikipedia.org/wiki/Retrospective_diagnoses_of_autism