Category Archives: Autism

Echolalia

As I told you all on my last post, Guto’s vocabulary had grown quite a bit. I am not sure how much of it he really understands what he is saying and how much is just repetition. Here is some known forms of communication that usually go along with autism.

Echolalia or scripting

Echolalia/Scripting is the repetition of phrases, words or parts of words. Echolalia may be a sign of autism, another neurological condition, a visual impairment or a developmental disability. Almost all toddlers go through a stage in which they “parrot” words and phrases that they overhear. Mimicry is an efficient way to experiment with different sounds and practice emerging social language skills. This is a normal and critical stage in language development.

Immediate Echolalia/scripting
When a person repeats back something that he or she has just heard, that is immediate echolalia. For example, if a parent says, “It’s time for a bath,” the child may repeat, “Time for a bath.” It is believed that by repeating back the words, the child is demonstrating that she can hear accurately, can physically produce speech and can remember it long enough to reproduce it. The next step is comprehension of speech, which may take months or years to develop.

Delayed Echolalia/scripting
Many people like to memorize and recite “catch phrases,” or sometimes whole paragraphs – perhaps scriptural verses, inspirational or historic speeches, or funny scenes from the movies. As long as the phrases are repeated in an appropriate social context, this is a widely accepted social behavior. Delayed echolalia is the repetition of phrases after a period of time – several minutes or a year after the phrase was originally heard – and the phrases may pop up any time, any place.

Echolalia/Scripting was once thought to be non-functional, but is now understood to often serve a communicative or regulatory purpose for the child.

 

Sources:

Autism Speaks

The Walk!

My parents got here at the end of September and it is always wonderful to have them around. I thought I would have tons of spare time with them being here to write the blog and catch up on things, but was I mistaken! It seems like I was even busier than ever.
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We participated for the first time in the Autism Speaks Walk a couple of days after they arrived. It turned out to be a beautiful day. I wish we had got to the Clinton Library earlier, but it was not easy to get Guto out of bed that morning. He woke up a bit indisposed and we were afraid he might actually be getting sick. But when we got there and Guto saw the stage it didn’t take long for him to go up on it and try to get into everything he could.
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The organization was great. There were a lot more people than what I expected. I loved seeing all the families supporting their loved ones. I am not sure if it was because there were so many people, but Guto was not on his best mood and just wanted to stay in the bouncy house. Therefore I didn’t walk around to see all the tents and people that were there, but as far as I could tell everything was a success.

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My heart was full to see family and friends together supporting us. Our team was awesome as you can see in the picture. There aren’t enough words to say how thankful I am for everyone that came (from close by and far away) and helped to make this day even more special. The actual walk was pretty short and afterwards most of our team went to Café Bossa Nova for lunch. Nothing like celebrating this great day with family, friends and good food.

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“There is nothing more beautiful than someone who goes out of their way to make life beautiful for others.” – Mandy Hale

PS: more pictures to follow

What to do when your friend’s child is diagnosed with autism

 It still not easy to say “My son is autistic”, not because it is hard to accept it, I made peace with that long time ago ( I wouldn’t have a blog if I wanted to hide this, right?), but because I never know what people’s reaction will be. And some of them can be very hurtful.  I am blessed to say that 98% of the time I had a supportive reaction, and had more good surprises than bad. So thankful for having so many loving, compassionate and respectful people around me.

*This post is from the blog “Childshould“.

Your friend or relative’s child was just diagnosed with autism, and it’s awkward and uncomfortable and you don’t know how to respond.

I get it.

No one does.

Here are some basics, both from my own experience and from hearing many autism families share on various message boards about what was helpful and unhelpful in the very beginning.

Do:

Call your friend. Texting doesn’t count! (Younger parents—I know you disagree on this. Take it from a forty-year-old. A real live phone call goes a long way!) Ask her how she’s feeling. Let her know that she can vent or cry to you. We are all afraid of being downers to other people. Knowing someone can handle the hard stuff means everything.
Bring over a cup of coffee. Or a casserole. Or a bottle of wine. Or fourteen Cadbury bars. I’ll always remember the friend who came by with Starbucks when she heard. The little things really do count the most at these hard times.
Keep inviting your friend to all things you would normally do together. Storytime on Tuesdays? Invite her. Playdate after school? Invite her. Your friend will decide if an outing is too much—but the worst thing is for her to feel isolated or rejected by the lack of invitation.
Treat her child the same way you always have. If this is your nephew and you have always had free reign to correct his behavior, keep it up! We want our kids to have as typical a life experience as possible, which means typical experiences with every day people. Unless or until your friend asks you to treat their child differently, just keep up business as usual.
If you can offer to babysit, do it. You cannot imagine the to-do list that was just dumped on your friend’s lap. Diagnosis means endless phone calls to insurance companies, state services, school districts, early intervention, speech, PT, OT, endless coordination of appointments, reams and reams of paperwork, and a whole reorganization of life as she knows it. And all of this has to be done while she is feeling grief, fear, and confusion—and still parenting and working and cooking and cleaning and all the daily stuff of life. Even if you can supervise the kiddos downstairs while your friend starts her list of phone calls upstairs, it will help. A lot.
Do know that your friend is genuinely mourning a loss. I know it’s taboo to say that early diagnosis is a time of mourning, but honestly, it is. Imagine going from typical parent dreams—that our kids will be athletes, valedictorians, successful spouses and parents—to simply wondering if they will ever live on their own, hold down a job, or even speak. There is grief there. Treat your friend as you would any person going through a tough time.

Don’t:

Don’t use a bunch of platitudes to try to make the person feel better. “It’ll be all right, it’s all good, everything happens for a reason, you’re the best person to handle all of this.” These things don’t make us feel better. They might make you feel better to say, but they make us shut down the actual expression of our feelings, our fears, and our intense new stress.
Don’t say, “I’m sorry.” Honestly, this doesn’t bother me personally. (I agree with the writer) When people say, “I’m sorry,” I assume that they mean they are sorry because it must be stressful and scary and hard—which it is. However, I know that many, many autism parents hear this differently and find it very offensive. Not worth the risk.
Don’t avoid your friend, assuming they want space. If you give someone space without first asking if they want space, they basically feel rejected and isolated. Everyone wants the choice of space. No one wants space forced upon them. Invite your friend out as you normally would, and do not take it personally if she can’t participate for a while.
Don’t stop bringing your child around the child with autism. I had regular weekly playdates with two friends and their kids for the two years prior to diagnosis—and literally never saw again afterwards. Both sent texts: so sorry, hang in there, and then had excuses every single time I texted for our typical playdates. I got the message pretty quickly—but it was still shocking, and still stung like crazy. Your child will not be stunted by hanging out with an autistic child. In fact, your child will definitely have autistic peers in school, so might as well start their education (and your own practice of inclusion) now.
Don’t humble-brag/compare/complain about your neurotypical kids. “I’m sure he’ll start talking. It’s just like how we never thought Billy would win gold at State, but then he did!” No. It’s not.
Don’t assume there is some huge, glowing autism community that has scooped up your friend and given her a fabulous social life. There isn’t. This disorder is wildly isolating for families. Plus, even when we meet other autism parents, the spectrum is so huge and our experiences so different that it’s still often hard to connect. The lucky ones will find a few great people along this road, but in the early days, we really need our long-time buddies.

Now call your friend and get to Starbucks and put on your listening ears. She will remember it forever. I promise.

Autism Symbols

Getting prepared for the Autism Speaks Walk is something that is helping to keep my sanity. Our team is called “Veiga Racing for Autism” and the name was picked mostly by my husband. Racing is his passion and he promised me to help raise awareness about autism through his racing, which we thought was a good fit.

After deciding on the name we had to start thinking about a logo, and that’s when I started to research about autism symbols. We have an idea about what we want to use, but we need to have something that will make it easy for people to know what we are supporting. I also need to figure out a logo for this blog, so the research seemed appropriated.

What I found was quite interesting and also made me think about the meaning of the symbols used to promote the cause. The most known symbol for autism is the puzzle piece and here is what I found out about it.

The origin of the puzzle piece, the primary symbol for autism, goes back to 1963. It was created by Gerald Gasson, a parent and board member for the National Autistic Society in London. The board believed autistic people suffered from a ‘puzzling’ condition. They adopted the logo because it didn’t look like any other image used for charitable or commercial use. Included with the puzzle piece was an image of a weeping child. The weeping child was used as a reminder that Autistic people suffer from their condition.

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It has been a long time since The National Autistic Society had a different vision on autism and changed their logo to a more positive one. The new one is a heavily stylized symbol of two figures reaching out to each other.

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The puzzle ribbon was adopted in 1999 as the universal sign of autism awareness. Although this image is a trademark of the Autism Society, the organization has granted use to other non-profit organizations in order to demonstrate unity and advance a universal mission as opposed to any individually held interests or promotion of a single organization.

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The Autism Awareness Ribbon — The puzzle pattern reflects the complexity of the autism spectrum. The different colors and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope — hope that through increased awareness of autism, and through early intervention and access to appropriate services/supports, people with autism will lead full lives able to interact with the world on their own terms.

I found out a lot of people dislike the puzzle piece symbol or the Autism Speaks slogan “Until all the pieces fit”. They believe the meaning behind it is negative. Like a symbol of isolation, or that the person is too mysterious to be understood, or even that they are not a whole person, that they are broken.

To me the puzzle piece symbolizes autism, the disorder, not my son. It symbolizes the mystery of his condition and not him. We are all still trying to figure out so much about ASD and that is the puzzle I am trying to complete. “Until all the pieces fit” means that I will fight and look for answers until I stop breathing or until the ASD puzzle is complete! It doesn’t mean I want to fix him, after all he is not broken like some people think!

I really liked what one parent said the puzzle piece meant for him. He said that his son was the piece missing in his life in order for him to be complete. My son for sure came to complete my life!!!

Whether the puzzle piece is seen as a symbol of diversity and hope or a motif representing isolation, the design has a major place in the world of ASD. It is by far the most recognized symbol for autism awareness. I did find a couple of other signs and the meaning for each are really interesting.

The rainbow-colored infinity symbol represents the diversity of the autism spectrum as well as the greater neurodiversity movement.

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The butterfly symbol represents something that is already unique and then it transforms into something even more beautiful. This has parallels with people living with autism, where we cannot judge what someone would be like in the future as transformations happen throughout their lives as they mature. As they blossom from their cocoon, their true colors of what they are surface and show their true beauty.

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There is a whole bunch of other figures that combined with the puzzle pieces somehow symbolize ASD and bring awareness to the cause.

Now I would like to know which symbols do you know and what do they mean to you?

 

Sources:

Autism Society: http://www.autism-society.org/about-the-autism-society/history/autism-awareness-ribbon/

The Art of Autism: http://the-art-of-autism.com/the-autism-puzzle-piece-a-symbol-of-what/

The many faces of autism: http://manyfacesofautism.weebly.com/autism-awareness-symbols.html

Autism Society Manitoba: http://www.autismmanitoba.com/news.php

KGB Answers: http://www.kgbanswers.co.uk/what-is-the-meaning-for-the-butterfly-symbol-in-autism-awareness/22806011

 

A letter to the new autism parent

This post is from the blog “Autism with a side of fries”. Being new to this world I thought it had some good insights.

Welcome to Club Spectrum!  You didn’t want to be here.  Don’t feel bad about that.  No one signs up for this gig.   Think of it this way, at least you now know what the Hell is going on.  Better than not knowing at all.  Mama Fry ain’t no expert but I do have some tips that help you from going bat shit crazy.

1)Pace yourself.  You are about to start a never ending marathon.  Know when to take a break.  Embrace the couch and some bad TV.  Or if you are one of those gym goers, do that.  Avid reader?  Go fire up that kindle or go old school and buy a few books.  You’re going to have a lot of time in therapy waiting rooms.  Might as well enjoy reading some check your brain at the door novels.  Know it’s okay to get absolutely nothing done on some days.  Or weeks.

2) Get off the Internet.  It can scare the crap out of you. Seriously, stop playing Dr. Autism Google.  You’re looking for the autism cure needle in a Internet haystack.  Step away from the search engine.

3) Get on the Internet.  I know, opposite advice.  Here’s the twist.  Get on social networking sites.  Talk to other parents.  Get to know them. Not just what they did to treat X Y and Z. You’ll get a better understanding if those choices are right for you.  Autism can make parents feel very isolated. Sometimes it is hard to get out and network.  Facebook, Twitter, and online groups are awesome.  Mainly because when you are in the dark on your kid’s iPad hoping like heck the melatonin will kick in soon, you can chat away.  (Don’t you go Googling melatonin yet.  You read this all first buddy!) Autism parents/caregivers are always awake somewhere on the planet.

4)Be prepared to hear a lot of advice you did not ask for.  Warning, it never ends. I find sarcasm and raising my eyebrows  over my glasses helps a lot.

5) Respect your elders in the ASD world.  Now don’t go taking their world as gospel but recognize what they do works for them.  You’ll see why as you earn your stripes.  The kiddo is 8 and we’ve been dealing with all things autism since he was before 2. Trust me newb, what you are telling me to try, we’ve done. Seriously, do you really want to be the type of person I just described in item number 4?  Don’t be that know it all parent out the gate. Remember they have been sleep deprived much longer than you. They will be quick to shut you down.

6) Accept the fact that you are going to try stuff that is totally not going to work.   That miracle thingie you just read about in a chat group won’t do jack all for your kid.  Meanwhile every other kid who has, is thriving.  It’s the luck of the draw with this folks.  You meet one kid with autism, you have only met one kid with autism.  Some cures/therapy/meds will be duds.

7) Autism is effing expensive.  So when Grandma or Uncle Frank wants to know what your lovey wants for their birthday, CASH IS KING!  Don’t be afraid to ask for therapy and or lessons for something as gifts.   These folks care about you and your kid.  They’ll be happy to know what they bought is actually getting used.   Not sitting around collecting dust.

8) Accept that some folks who buy gifts for your kid won’t do the above.  You’re going to get a lot of gifts that your kid won’t even be remotely interested in.  They meant well.   They knew it was a hot toy.  Save it.  You never know.  Maybe in a year or two, they might like it.  Or donate it.  Regift it.  Return it for therapy cash.

9) Be open to doing stuff you think is ridiculous.  You really just don’t know what your kid is going to respond too. Give it an honest college try before you realize if it’s a hit or a miss.  This means diet, meds, therapy, supplements etc. Just try.

10) Take your kid out everywhere.  I’m serious.  It may be small trips at first but it is the best thing you can do.  You’re teaching them coping skills.  Life happens.  People have to food shop, go to the bank, post office etc.  You would be doing it anyway if they didn’t have autism. Know their limits of course.  Baby steps first.  Today, it’s a trip to buy milk.  Another time, maybe it’s a trip to the pet store and the library.  Life from now on will take military like planning. Warn them what’s coming but go about your business.  They smell fear.  Seriously, the more panicked you are, they will turn that dial to “11”.

11) Allow yourself a pity party.  Moan, cry, rant and rave and do it when you need too.  More than once.   Just remember you still have a kid that needs you.   So don’t dwell in it to long.   If you find yourself doing it to far to frequently, know when to ask for help.  Be it from a partner, family member, friend, or doctor. Yes, this isn’t what you planned but it’s here.  So now what?  Exactly.

This isn’t about getting through it to an end point.  This is your life now.  This is your new normal.  I can’t promise it will get easier.  You will just get better at dealing with it.  Be it through humor, prayer, yoga, crafting, blogging, or a thousand other escapism activities. You will do this.  You can do this.  Remember for as hard as you are working, so is your child.  So now and then, relax and just order another side of fries.

 

Treatments

There is no doubt in my mind that everyone that come across a diagnosis, no matter what the disease is, will start looking for available treatments and a cure to their problem. So one of the first thing I started looking for was what could I do to cure my child. I found out that while there is no known cure for autism, there are treatment and educational approaches that can address some of the challenges associated with the condition.

Most professionals agree that the sooner in life a child receives early intervention services, the better the child’s prognosis. As soon as autism is diagnosed, early intervention instruction should begin.

Early intervention services help children from birth to 3 years old (36 months) learn important skills. Effective programs focus on developing communication, social, and cognitive skills. Treatment works to minimize the impact of the core features associated deficits of ASD and to maximize functional independence and quality of life. Each child or adult with autism is unique and, so, each autism intervention plan should be tailored to address specific needs.

Early intensive behavioral intervention involves a child’s entire family working closely with a team of professionals. In some early intervention programs, therapists come into the home to deliver services. This can include parent training with the parent leading therapy sessions under the supervision of the therapist. Other programs deliver therapy in a specialized center, classroom or preschool.

In addition to communication, social, and cognitive deficits many persons with autism have additional medical conditions such as sleep disturbance, seizures and gastrointestinal (GI) distress. Addressing these conditions can improve attention, learning and related behaviors.

Types of Treatments

There are many different types of treatments available. For example, auditory training, discrete trial training, vitamin therapy, anti-yeast therapy, facilitated communication, music therapy, occupational therapy, physical therapy, and sensory integration.

The different types of treatments can generally be broken down into the following categories:

· Behavior and Communication Approaches
· Dietary Approaches
· Medication
· Complementary and Alternative Medicine

Behavior and Communication Approaches

According to reports by the American Academy of Pediatrics and the National Research Council, behavior and communication approaches that help children with ASD are those that provide structure, direction, and organization for the child in addition to family participation.

Applied Behavior Analysis (ABA)

A notable treatment approach for people with an ASD is called applied behavior analysis (ABA). ABA has become widely accepted among health care professionals and used in many schools and treatment clinics. ABA encourages positive behaviors and discourages negative behaviors in order to improve a variety of skills. The child’s progress is tracked and measured.

There are different types of ABA. Following are some examples:

· Discrete Trial Training (DTT)

DTT is a style of teaching that uses a series of trials to teach each step of a desired behavior or response. Lessons are broken down into their simplest parts and positive reinforcement is used to reward correct answers and behaviors. Incorrect answers are ignored.

· Early Intensive Behavioral Intervention (EIBI)

This is a type of ABA for very young children with an ASD, usually younger than five, and often younger than three.

· Pivotal Response Training (PRT)

PRT aims to increase a child’s motivation to learn, monitor his own behavior, and initiate communication with others. Positive changes in these behaviors should have widespread effects on other behaviors.

· Verbal Behavior Intervention (VBI)

VBI is a type of ABA that focuses on teaching verbal skills.

The Lovaas Model consists of 20-40 hours of highly structured, discrete trial training, integrating ABA techniques into an early intervention program. The intervention typically begins when the child is between the ages of 2-8 years old, and no later than 12 years old. The technique utilizes child-specific reinforcers to motivate and reward success. Additionally, the use of language and imitation are crucial for the teaching model.

The Early Start Denver Model is an early intervention program designed for infants, toddlers, and preschoolers ages 12-48 months with autism. Developed by Geraldine Dawson, Ph.D., and Sally Rogers, Ph.D., it is the only experimentally verified early-intervention program designed for children with autism as young as 18 months old. ESDM applies the principles of ABA to an early-intervention program. Similar to Pivotal Response Training, interventions are delivered within play-based, relationship-focused routines.

Other therapies that can be part of a complete treatment program for a child with an ASD include:

Developmental, Individual Differences, Relationship-Based Approach (DIR; also called “Floortime”)

Floortime focuses on emotional and relational development (feelings, relationships with caregivers). It also focuses on how the child deals with sights, sounds, and smells.

Relationship Development Intervention® (RDI)

RDI is a family-based, behavioral treatment designed to address autism’s core symptoms. Developed by psychologist Steven Gutstein, Ph.D., it builds on the theory that “dynamic intelligence” is key to improving quality of life for individuals with autism. Dr. Gutstein defines dynamic intelligence as the ability to think flexibly. This includes appreciating different perspectives, coping with change and integrating information from multiple sources (e.g. sights and sounds).

Treatment and Education of Autistic and related Communication-handicapped CHildren (TEACCH)

TEAACH uses visual cues to teach skills. For example, picture cards can help teach a child how to get dressed by breaking information down into small steps.

Occupational Therapy

Occupational therapy is often used as a treatment for the sensory integration issues associated with ASDs. It is also used to help teach life skills that involve fine-motor movements, such as dressing, using utensils, cutting with scissors, and writing. OT works to improve the individual’s quality of life and ability to participate fully in daily activities.

Physical Therapy

Physical therapy is used to improve gross motor skills and handle sensory integration issues, particularly those involving the individual’s ability to feel and be aware of his body in space. Similar to OT, physical therapy is used to improve the individual’s ability to participate in everyday activities. PT works to teach and improve skills such as walking, sitting, coordination, and balance.

Sensory Integration Therapy

Sensory integration therapy helps the person deal with sensory information, like sights, sounds, and smells. Sensory integration therapy could help a child who is bothered by certain sounds or does not like to be touched.

Speech Therapy

Speech therapy helps to improve the person’s communication skills. Some people are able to learn verbal communication skills. For others, using gestures or picture boards is more realistic.

The Picture Exchange Communication System (PECS)

PECS uses picture symbols to teach communication skills. The person is taught to use picture symbols to ask and answer questions and have a conversation.

Restructuring Oral Muscular Phonetic Targets (PROMPT)

This is a multidimensional approach to speech production disorders has come to embrace not only the well-known physical-sensory aspects of motor performance, but also its cognitive-linguistic and social-emotional aspects. PROMPT is about integrating all domains and systems towards positive communication outcome. It may be used (with varying intensity and focus) with all speech production disorders from approximately 6 months of age onward. To achieve the best outcome with PROMPT it should not be thought of or used mainly to facilitate oral-motor skills, produce individual sounds/phonemes or as an articulation program but rather as a program to develop motor skill in the development of language for interaction.

Medication

There are no medications that can cure ASD or even treat the main symptoms. Pharmaceutical treatments can help ameliorate some of the behavioral symptoms of ASD, including irritability, aggression, self-injurious behavior, manage high energy levels, inability to focus, depression, or seizures. Additionally, by medically reducing interfering or disruptive behaviors, other treatments, including ABA, may be more effective. Medications should be prescribed and monitored by a qualified physician.

 References:
Autism Science Foundation
Autism Speaks
Center for Disease Control and Prevention (CDC)

Let’s talk about Autism

As soon as I realized there was a possibility of my son having autism I started looking for information everywhere I could. Most of what I knew about this disorder was based on what I saw in movies, and most of what they showed about it didn’t seem to fit in what I saw in my little boy, so how I was supposed to accept such a diagnosis?

I think one of the reasons people are so scared of this disorder is the fact they know nothing about it. All we know is what we see on TV and that is not even 1% of what ASD is. I was determined to learn more. I had to understand how my son was put in this “spectrum” and for our sake I needed to get more information. I called everyone I could think of that I knew who had some knowledge about it. I called people in Brazil, I sent messages to great doctors I am blessed to know and e-mails to people I have never seen in my life. To my relief almost everyone I contacted was willing to help in some way. If you are a desperate mom you go above and beyond to find help for you child. And at that time information was the help I needed most. I have no idea how many hours I spent (and still spend) on the computer searching. Thankfully there is a lot of serious websites about the subject and I was able to learn quite a bite about it in a relatively short amount of time.

Since this blog is not only about our story, but also an attempt to help raise awareness and knowledge about autism I will share with you everything I find about the topic. So let’s start learning more about this complex disorder that is now part of my family’s life and may be closer to you than you think.

First of all, we need to know what this so called disorder is all about.

Autism spectrum disorder (ASD) refers to a group of complex neurodevelopment disorders. ASD is characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. The symptoms are present from early childhood and affect daily functioning. Even though autism appears to have its roots in very early brain development, the most obvious signs and symptoms of autism tend to emerge between 2 and 3 years of age.

ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art. Symptoms can range from mild to severe and vary with each individual. For instance, some children may rarely use words to communicate, while others may hold extensive conversations and use rich language. Some children may not like to be hugged or touched, while others seek out and enjoy physical touch.

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.

ASD occurs in every racial and ethnic group, and across all socioeconomic levels. The latest analysis from the Centers for Disease Control and Prevention estimates that 1 in 68 children have ASD. Studies also show that autism is four to five times more common among boys than girls. An estimated 1 out of 42 boys and 1 in 189 girls are diagnosed with autism in the United States. ASD affects over 3 million individuals in the U.S. and tens of millions worldwide. Moreover, government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered.

What causes ASD?

Though ASD research has advanced significantly in the past decade, it is still not known exactly what causes the disorder. It’s likely that there are multiple causes, and thus multiple “autisms.” First and foremost, we now know that there is no one cause of autism just as there is no one type of autism. Scientists believe that both genetics and environment likely play a role in ASD. There is great concern that rates of autism have been increasing in recent decades without full explanation as to why. Researchers have identified a number of genes associated with the disorder. Imaging studies of people with ASD have found differences in the development of several regions of the brain. Studies suggest that ASD could be a result of disruptions in normal brain growth very early in development. These disruptions may be the result of defects in genes that control brain development and regulate how brain cells communicate with each other. Autism is more common in children born prematurely. Environmental factors may also play a role in gene function and development, but no specific environmental causes have yet been identified. We do know that ASD is not caused by psychological factors, parenting behaviors or practices, or vaccines.

What role do genes play?

Twin and family studies strongly suggest that some people have a genetic predisposition to autism. Identical twin studies show that if one twin is affected, then the other will be affected between 36 to 95 percent of the time. There are a number of studies in progress to determine the specific genetic factors associated with the development of ASD. In families with one child with ASD, the risk of having a second child with the disorder also increases. Many of the genes found to be associated with autism are involved in the function of the chemical connections between brain neurons (synapses). Researchers are looking for clues about which genes contribute to increased susceptibility. In some cases, parents and other relatives of a child with ASD show mild impairments in social communication skills or engage in repetitive behaviors. Evidence also suggests that emotional disorders such as bipolar disorder and schizophrenia occur more frequently than average in the families of people with ASD.

In addition to genetic variations that are inherited and are present in nearly all of a person’s cells, recent research has also shown that de novo, or spontaneous, gene mutations can influence the risk of developing autism spectrum disorder. De novo mutations are changes in sequences of deoxyribonucleic acid or DNA, the hereditary material in humans, which can occur spontaneously in a parent’s sperm or egg cell or during fertilization. The mutation then occurs in each cell as the fertilized egg divides. These mutations may affect single genes or they may be changes called copy number variations, in which stretches of DNA containing multiple genes are deleted or duplicated. Recent studies have shown that people with ASD tend to have more copy number de novo gene mutations than those without the disorder, suggesting that for some the risk of developing ASD is not the result of mutations in individual genes but rather spontaneous coding mutations across many genes. De novo mutations may explain genetic disorders in which an affected child has the mutation in each cell but the parents do not and there is no family pattern to the disorder. Autism risk also increases in children born to older parents. There is still much research to be done to determine the potential role of environmental factors on spontaneous mutations and how that influences ASD risk.

What Does It Mean to Be “On the Spectrum”?

The term “spectrum” refers to the wide range of symptoms, skills, and levels of disability in functioning that can occur in people with ASD. Some children and adults with ASD are fully able to perform all activities of daily living while others require substantial support to perform basic activities. With the May 2013 publication of the DSM-5 diagnostic manual all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.

Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disabilities and are unable to live independently. About one third of people with ASD are nonverbal, but can learn to communicate using other means.

References
Centers for Disease Control and Prevention
Autism Speaks 
National Institute of Neurological Disorders and Stroke (NINDS)
Autism Science Foundation
The Children’s Hospital of Philadelphia 
National Institute of Mental Health (NIMH)

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First screening

The day finally came, the moment of truth. I always play with my husband saying “I am always right,” but this time I was hoping I wasn’t. The evaluation was done on a Monday morning and it took almost 3 hours. It was done in a big room, with some toys in the waiting area and a couple of smaller rooms to one side. Guto liked the ball pit they had and he played with a train set while we talked to the people that were waiting for us. He was going to be evaluated by an Occupational Therapist (OT) and by a Psychologist (PSY). We didn’t have a speech evaluation since we had done one not long before.

The OT told us to just let him play by himself while she observed. She gave me a questionnaire to fill out while she watched him. Later she took all of us to a smaller room where she again played with him. She asked some questions and gave him some things to do like put cheerios inside a cup, stack cubes, match things in a board, open a book and to our delight he did everything she asked of him.

During the PSY evaluation, in the same room we were before, he was given some things to play and look at, like a phone, a scarf to play peekaboo and an electric bunny, which he loved. The therapist would call him by his name, but he never answered. Then she made us call him as well, but he did not respond to us either. After observing him playing and the way he interacted during that time she asked us to wait outside while she talked to the other therapist to discuss their findings.

After what seemed to be a long time, but truly was not, they came out and talked to us. I can’t remember everything that they said, but some of things that made more of an impact I still remember and they are stuck in my head. “After watching him we believe he is in the autistic spectrum”, “he is very young so we are not going to choose a diagnosis yet”, “he has so many positives in his favor.” When we asked what made them conclude he was autistic they said the main reason was the fact he doesn’t answer when we called him by name. “Based on all the positive attributes we wondered if perhaps he had some other issuer, but there is nothing else that explained why he wouldn’t be answering when you called. So if it is not autism, then what is it?” I remember thinking so that was it! Just like that I felt my life had changed with the blink of an eye.

In a way I was relieved because at least now I was going to be able to get him the help that he needed, but on the other hand I was devastated. I had read so much about autism in the previous couple of weeks and nothing was very encouraging. When I self-diagnosed him I kept hoping I was wrong, but now I had experts telling me that more than likely I had been correct with my diagnosis.

I remember being calm when they told us what they were thinking and I remember asking them “Do you think he will be independent, will he be able to have a fairly normal life?” They told me they were very optimistic due to his positive traits, but I know they can’t guarantee anything, and that really is scary. I just needed someone telling me I didn’t need to worry, that everything would be okay, but how can you be certain? I remember them saying “you seem to be OK with that.” The truth is that I had been preparing myself for that moment for some time so I was calm and I probably looked okay from the outside, but I was not and I am still not. I wonder what they expected my reaction to be. Maybe if I had cried they would have been able to see that I was not okay inside, but they had no way of knowing I had been crying on a daily basis for over a month before that day. I had just accepted it.

Some of the other things that I asked included, “since he doesn’t have a definite diagnosis, does it make any difference as to what I need to do now? Will this delay treatment for him?” They assured me that it didn’t make any difference on what I should do from now on. Early intervention was definitely the most important task at hand. I needed to look for therapy providers and work on his weaknesses. The only time the lack of an autism diagnosis might interfere with his treatment would be when he is ready for school, in which case the system needs to know about his condition in order to get financial assistance if available. So a new evaluation will be done when he reaches the age of 4.

So we got a *r/o diagnosis of Autism, at least now we had something to work with. We could finally start seeking the help he needed.

*A rule out (r/o) diagnosis means that , in the eyes of the diagnostician (perhaps a psychologist or psychiatrist) the diagnosis in question is a distinct possibility, and warrants further exploration.

I saw the signs…

Unsplash - sign_Fotor

“I saw the sign and it opened up my eyes, I saw the sign
Life is demanding without understanding
I saw the sign and it opened up my eyes, I saw the sign
No one’s gonna drag you up to get into the light where you    belong. But where do you belong?” (Ace of Base)

 

There are two steps for screening autism. First is the developmental screening, second a comprehensive diagnostic evaluation.

The first two years of a baby’s life are crucial for his/her growth and development. During this period you will take your baby to the pediatrician for check-ups, also known as well child visits. On those appointments, the doctor or a nurse will always measure baby’s length, weight and head circumference. The doctor will also make observations of your child’s behaviors, ask you about baby’s milestones typical to his/her age at the time and ask you if you have any concerns. Here is where the first step of a screening happens. Developmental screening is a short test to tell if children are learning basic skills when they should, or if they might have delays. During developmental screening the doctor might ask the parent some questions or talk and play with the child during an exam to see how she learns, speaks, behaves, and moves. A delay in any of these areas could be a sign of a problem. I didn’t know the questions our pediatrician was asking had anything to do with autism screening, I knew she was trying to make sure he was developing the way he was supposed to, but it never crossed my mind she was asking those question to make sure he was not in the spectrum. It was not until the 9 months appointment that she mention the questions she was to assess him for autism, and she also assured me he had passed every single one of them so far.

All children should be screened for developmental delays and disabilities during regular well-child doctor visit. According to the CDC, here are some signs that show some indication of a developmental delay and that should be mentioned to a doctor for further investigation. Most of them are red flags for autism. You should talk to your pediatrician if your baby:

At 6 months
·         Doesn’t try to get things that are within reach
·         Shows no affection for caregivers
·         Doesn’t respond to sounds around him
·         Has difficulty getting things to mouth
·         Doesn’t make vowel sounds (“ah”, “eh”, “oh”)
·         Doesn’t roll over in either direction
·         Doesn’t laugh or make squealing sounds
·         Seems very stiff, with tight muscles
·         Seems very floppy, like a rag doll

At 9 months
·         Doesn’t bear weight on legs with support
·         Doesn’t sit with help
·         Doesn’t babble (“mama”, “baba”, “dada”)
·         Doesn’t play any games involving back-and-forth play
·         Doesn’t respond to own name
·         Doesn’t seem to recognize familiar people
·         Doesn’t look where you point
·         Doesn’t transfer toys from one hand to the other

At 12 months
·         Doesn’t crawl
·         Can’t stand when supported
·         Doesn’t search for things that she sees you hide
·         Doesn’t say single words like “mama” or “dada” (Guto said mama and dada, but never meaning to call us)
·         Doesn’t learn gestures like waving or shaking head
·         Doesn’t point to things (Guto would not point with an index finger)

At 18 months
·         Doesn’t point to show things to others (Again, not pointing with an index finger)
·         Can’t walk
·         Doesn’t know what familiar things are for
·         Doesn’t copy others
·         Doesn’t gain new words
·         Doesn’t have at least 6 words
·         Doesn’t notice or mind when a caregiver leaves or returns 

At 24 months
·         Doesn’t use 2-word phrases (for example, “drink milk”)
·         Doesn’t know what to do with common things, like a brush, phone, fork, spoon
·         Doesn’t copy actions and words
·         Doesn’t follow simple instructions
·         Doesn’t walk steadily

*The signs Guto was showing are bold

IMPORTANT: You should talk to your doctor if at any time your child loses a skill he/she once had, no matter what age!

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Internet and the M-CHAT

Computer
It took me less than a week to diagnose Guto. Yeah, you read it right, I diagnosed him! Besides, isn’t that what google is for? Jokes aside, I searched all kinds of websites to read more about autism. I ended up finding a really good tool to help me verify if my diagnosis made any sense, if I was on the right track and if I fear about my son being autistic was correct.

The M-CHAT-R is a validated instrument for screening toddlers between 16 and 30 months of age used to assess the risk for autism spectrum disorders (ASD).The primary goal of the M-CHAT-R is to maximize sensitivity, meaning to detect as many cases of ASD as possible. Therefore, there is a high false-positive rate, meaning that not all children who score at risk will be diagnosed with ASD. To address this, there are Follow-Up questions (M-CHAT-R/F). Users should be aware that even with the Follow-Up, a significant number of the children who screen positive on the M-CHAT-R will not be diagnosed with ASD; however, these children are at high risk for other developmental disorders or delays, and therefore, such evaluation is warranted for any child who screens positive. The M-CHAT-R can be scored in less than two minutes. (2009 Diana Robins, Deborah Fein, & Marianne Barton) The score ranges from 0-20, where from 0-3 is low risk for ASD, 3-7 medium risk and 8-20 high risk. Guto scored 8 on the M-CHART-R and it was high again on the follow up questionnaire. 

You can assess your child’s risk level here

So now I was in a battle against time to get him a real evaluation by a professional. Everything I read regarding ASD said that early intervention was the key for a better outcome, and I was determined to get him started in whatever intervention was necessary as soon as humanly possible. I can tell you one thing for sure; I never imagined it was going to be this hard to get the evaluation!

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