Autism Awareness-A Call To Action!

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As some of you know, that have been reading my blog for awhile, I am a special education teacher. I am also a consultant and advocate. It has been both an interesting and rewarding choice for my life’s work. A choice that I have never regretted. At times, it has been fascinating and encouraging, and other times frustrating and overwhelming….much like life itself. There are good days and well, the not so good days.

April is autism awareness month. Those of us who are immersed in the world of autism understand that awareness is not just one month out of the year, but an every day call to action. As time goes on, more and more people are being made aware of autism because they are personally being touched by it. They have a loved one with an autism spectrum diagnosis, or a friend’s child, or a classmate or the family that sits behind you in the pew at church. Even though the CDC just announced that so far this year the numbers of autism diagnoses are stable, but up to this point, the number of autism diagnoses has accelerated over the the past 25-30 years. In the late 1980’s autism was known about, but considered fairly rare. My college professors said that I, as a special education teacher, would probably have more students with Down Syndrome or intellectual disabilities or learning disabilities than a child with autism. At that time autism was about 1 in every 10,000 births. By 2000 it was 1:150. Then it was 1:88. Now it is 1:68.

The people in this epic battle with autism, don’t always agree on what causes autism. They might not agree on what are the best therapies. Whether or not a strict diet will help ease the physical pain that often accompanies those with autism. Individuals with high functioning autism have their own issues with which to contend. “Oh, he doesn’t look autistic. I think he will outgrow it. Just give him time.” (As if, there is a specific autism “look” and “giving him time” only delays the intervention that is desperately needed.) Sometimes supports are overlooked because he seems “so normal” accept for his quirkiness. It is a struggle.

The journey with autism is real for a lot of parents. All these children that have been diagnosed over the past quarter century are growing up. What do families do when their child with autism grows up? The supports for adults with autism are sorely lacking. As these children grow up and age out of the school system, there will be a tsunami of autism in the adult world, like nothing we’ve ever seen before. We, as a society, cannot abandon these individuals or their families. Burying our heads in the sand, will do nothing to solve the problem.

This is a call to action. Not just to wear a special color on a special day, but to stand up and advocate every day. To make a difference in the lives of these individuals……

Autism Stats:

*Prevalence of ASD is estimated at 1:68 births (CDC,2014)

*It is five times more prevalent in boys than in girls.

*There is no known cause or cure.

*No two persons with Autism Spectrum Disorder (ASD) are alike.

*Early intervention (EI) is key! Outcomes improve when diagnosis and intervention occur early.

(stats from: OCALI- Ohio Center for Autism and Low Incidence)

A previous, older post of mine,on autism….notice the difference in the stats from the mid 2000’s to now.

https://gibsongirl247.wordpress.com/2013/04/02/autism-is-not-a-dirty-word-2/

 

 

Incredibly Unique

If you have met one person with autism, then you’ve met ….them all  one person with autism. Anyone who works with, knows, or loves someone with autism, understands that this is true. Just as we are each unique in our own right, the same goes for those on the autism spectrum. Individuals with autism share some basic characteristics, but other than that they are incredibly unique.

April is Autism Awareness month. As someone who has spent many years working with and loving those with autism, I wanted to share some of my posts from years past. It is interesting looking back and reading these posts because so much has changed in a matter of a few short years. What used to be a statistic of 1 in 150 children being on the autism spectrum, is now I think at last check, 1 in 68. (Some even say 1:50) Research needs to continue to uncover the cause of this widespread epidemic. When I was in college in the late 80’s, studying for my special education major, I don’t remember autism even being discussed. If it was, it was not in much detail. Now, twenty-five years later, everyone has heard of autism. What has changed in that short amount of time?

You can read some of my previous posts on autism, here. You can also read here and here.

 

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Making A Real Difference

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My friend was sitting at my kitchen counter yesterday morning. She hangs out while I work with her son during Fun Kitchen Fridays. He is learning life skills as we create a cookbook for independent living.  My friend told me that a jeep had just pulled up in my snow covered driveway. Dogs began barking as I opened the door. Flowers for me? Completely unexpected, but welcomed. The flowers were beautiful and smelled like spring on a cold winter day. The card attached read: Thank you for helping my Mom change my life. Love, K.D

The message was short. Simple. Sweet.

Yet, to me, deeply profound. I had what my son likes to refer to as “moist eyes”, as I read the card.

Over the past several weeks I have been consulting with K’s mom. K is on the autism spectrum and she needed help with school planning. Planning that would teach her, and challenge her, and benefit her….things that would make a real difference in the life of this young child.

For parents of children with special needs, many times the battles are great. Being an advocate is not easy work. There are set backs and disappointments, so when the battle is finally won the rewards are often bitter sweet.

Sometimes when life gets us down and everything seems to be going wrong, a small, simple gesture can mean so much.

Making a real, positive, difference in a person’s life. One day at a time.

“They also will answer, ‘Lord, when did we see you hungry or thirsty or a stranger or needing clothes or sick or in prison, and did not help you?’

 “He will reply, ‘Truly I tell you, whatever you did not do for one of the least of these, you did not do for me.’

Matthew 25: 44-45  NIV

Autism Is Not A Dirty Word (2)

April is autism awareness month. For those that have a family member with autism, they know all too well about autism. For those of you that don’t, I hope my blog post will help you understand a little bit more. I wrote this post about 6 years ago. I quoted a statistic of autism being 1 in every 150 children being diagnosed. In just a few short years the numbers have changed. Now, there are 1 in every 88 children being diagnosed somewhere on the autism spectrum (PDD-NOS, Autism, Aspergers and other pervasive developmental disorders). Just in the past two weeks a new study suggests that autism diagnoses could be as low as 1 in every 50 children.

Something is happening. More research needs to be done. More answers are needed. Now.

English: A "puzzle" ribbon to promot...

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Autism Is Not A Dirty Word

 

As many of you might know I worked with and taught people with special needs for many years. (17 professionally as an educator and for 6 years before that as a volunteer, camp counselor and as a house counselor in group homes.) My goodness, have I been privy to some good stories over the years….some hysterically funny,some frustrating, some sad….but all interesting and good learning experiences for me. Well, about 6 years ago I had a kindergarten student enter my classroom. His entering my classroom began an adventure for me, an adventure that I am still on. You see this particular little boy with chocolate brown eyes and with skin the color of latte was my teacher. He taught me about autism by living out his story every day. When he first came into my life he was wild as a little animal. He threw himself to the floor in tantrums, he bit me, he was all the time spitting at me, he smacked me and he cried. I knew he was autistic but I didn’t know much about autism back then. I had never had an autistic student before in all my years of teaching. I remember one day in particular. This little boy was having a difficult day. We were getting nowhere. Finally, mid-morning, I told my teaching asst. to watch my classroom. I was going to take this child outside to the playground. I didn’t care that it wasn’t recess. We needed to get out of the room. He loved the up and down motion of the swing, it soothed him. So that is what we did. At this point I was mentally and physically exhausted. I sank down on a bench on the playground and tears rolled down my face. “God, I can’t do this! It’s too hard! He doesn’t understand me…and I don’t think he even likes me at all! I’m tired of the spitting and slapping and school has only been in session a few weeks. I just can’t do it.” These thoughts continued through my mind as I sat and watched him swing..back and forth, back and forth. Then I heard the voice…well, not audibly, but the voice was just as clear to me as if God himself was sitting beside me conversing with me. “DAWN, HE HAS AUTISM. IT IS PART OF HIM, BUT IT IS NOT ALL OF HIM. YOU WILL GROW TO LOVE THIS CHILD AND HE WILL BE SPECIAL TO YOU. RIGHT NOW I WANT YOU TO ALLOW ME TO LOVE HIM THROUGH YOU. ” What peace that came over me. Just like that. Now, those of you reading this might think I had some sort of mental breakdown or something that day on the playground. It’s okay with me if you think that…..but I know the Real Truth. From that day forward things changed. Sure, I still got slapped and spit on. There were still tantrums. The thing is something changed IN ME. Days turned into weeks, weeks to months, months to years. I worked with this little boy and he made progress…so much progress that other teachers were amazed by his transformation. I learned about autism and figured out his strengths. This child was intelligent in so many ways. His visual memory, and his spelling skills were incredible. He learned better communication skills so he didn’t need to tantrum, or slap anymore. He was special to me and to my teaching assistant. Yes, he was even a bit spoiled by us. He had come so far….and so had we. Later on, my supervisors gave me more students with autism because of my success with this little boy. Over the past several years I’ve become fascinated by autism and what having autism means to a person that is autistic. I’ve met autistic people, I’ve read and researched, asked questions, and had real relationships with children that happen to have autism. I’ve talked with their parents. I’ve learned a lot. There was another of my students that I also got in my room when she was in kindergarten. Talk about a stubborn little firecracker! But funny…I really enjoyed her in my classroom. She has become quite the artist at age 8 and has made so much progress. Sure, she is autistic….but that is only one thing about her. She’s so much more than that label. That girl is going places and I’m very proud of her.

Now, I’ve been touched by someone in my own family that just recently was diagnosed with autism. He’s four years old. He has big, beautiful eyes. He’s crazy about movies and he looks mighty sharp in his dress shirt and cowboy boots. His grandfather and I enjoyed spending time with him this summer. His journey is just beginning. It will be a long, hard journey. It is a road that at times will be frustratingly difficult. His parents will want to cry as they get bogged down in the mire of school politics. My heart goes out to them…..but this journey will change them, and make them stronger as they advocate for their son.

Today, one in one hundred fifty children is diagnosed with autism. That is far too many. Hopefully, one day doctors will understand what causes autism. Hopefully, in the future there will be a cure….but, in the meantime we can’t give up

Graduate Level Class

To all my readers,

I am currently taking a graduate level class on speech and language development in children with Autism Spectrum Disorders. I will be using my blog once or twice a week to post my writing assignments. I realize that this is a bit more in depth than you are used to reading from me, but who knows you might learn something new and interesting!

Thanks for taking the time to read:)

ASD: Communication and Language Development

Society would have us believe that those individuals with autism, often rock back and forth and are held captive in their own worlds, unaware of anyone or anything around them. Hollywood would tell us that autism creates someone like Dustin Hoffman’s character in Rain Man (1988). Medical doctors are seeing an increase in cases of Pervasive Developmental Disorders among children. According to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network, one in eighty-eight children are identified to have an Autism Spectrum Disorder (CDC, 2013). Educators are seeing an undeniable spike in children on the Autism Spectrum. Parents are left wondering what is the matter? Why isn’t my child acting in a typical way? There are a lot of questions out there about Autism Spectrum Disorders. In this blog post I am going to try and answer the question, “ASD, what is it?”

​According to the Diagnostic and Statistical Manual of Mental Health (Autism Society, Diagnostic Classifications), there are several subtypes that fall under the classification of Pervasive Developmental Disorders or Autism Spectrum Disorders. They are Asperger’s Syndrome, Autistic Disorder, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Rett’s Syndrome, and Childhood Disintegrative Disorder. These titles are a mouthful to say, but what do they mean? Simply stated, any individual that falls under the umbrella of Autism Spectrum Disorders (ASD) is going to have three main issues that characterize their journey. These struggles are with, social interaction, communication, and restricted/repetitive patterns of behavior/actions/or interests (WebMD, 2013). Some children that struggle with social interactions may appear to want to be alone, be hypersensitive to sounds or textures, blurt out or repeat words, or say things that are not appropriate to the situation. For example, a student who is overwhelmed by the sights and sounds of the playground at school, might choose to stand away from his classmates and observe from a distance, where it is more quiet and calm. He might have a toy in his hand that he squeezes because it gives him comfort and calms him when his anxiety level is high. Children that struggle with communication often times are unsure of what to say or how to say it. Language is confusing to these individuals. It is not unusual for a child to say one word, and mean another entirely. Communication is a learned interactive skill. If there is a break in the line of communication it can be, and often is, confusing to a child with ASD. It is often the case that, children on the spectrum will have restrictive or repetitive behaviors. For one child it might be repeating the same movie scene over and over again because it gives a sense of routine and understanding of what will happen next. Another child might memorize numbers and be a whiz at phone numbers, birthdays, license plates, or multiplication tables. There is no one thing that all children with ASD do repetitively. Each child with ASD is different, as are all children.

As I mentioned earlier, communication is one of the greatest struggles for those on the autism spectrum. From the time they are babies, these children have difficulties with joint attention, communicative intent, pragmatics, and nonverbal communication. Gestural vocabulary appears several months prior to approximations of spoken words. In typically developing children, there is an alternating eye gaze between a person and an object around this period of time. This communication is called coordinated joint attention (Hall, 2013, p.171). A child on the autism spectrum will have difficulty making the connection with eye gaze between the caregiver and the object that is wanted. It is possible that the baby will not want to be held or even share eye contact at all. Communicative intent is being able to wait to get an adult’s attention before pointing, is essence asking for assistance. It is persistence, and being able to devise a new plan when the first one didn’t work. A typical young child understands that they need to get the eye contact of mommy or daddy, because mommy or daddy will help them get what they need. Most typical children become masters at the art of getting attention. This is not the case with the ASD child. He/she struggles with eye contact or being able to devise news ways to get what they need. For example, the child might look at a cup of milk that is wanted, and just stare at it but, not put together that they need to communicate to the adult that they are interested in having more milk. Pragmatics is knowing the context in which to use language. It is “getting” the meaning of words. A child with autism has difficulty with pragmatics. Many times jokes or sarcasm are lost on a child with ASD. These children tend to be very literal and will become frustrated with abstract conversations. Finally, nonverbal communication are all those things that a typical child “reads” without thinking about it. If mom is angry, she has a scowl on her face. A child takes one look and knows mom is not happy. The ASD child will not be good at reading body language or facial expressions. This child might not even notice that mom is angry and continue to talk about other things that he/she is interested in, completely ignoring mom’s bad mood.

This chart shows the communication development of typical children up to twenty four months (Hall, 2013, pp. 170-173), along with the threshold of what is considered normal development (Mayo Clinic, Autism Symptoms). If a child is delayed at or beyond this threshold for these milestones, doctors become concerned. At that point, one might consider having the child evaluated for an Autism Spectrum Disorder.

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Although, each of the subtypes of Autism Spectrum Disorders share certain characteristics as I have mentioned, they are also each unique. First, there is Asperger’s Syndrome. Asperger’s has gotten a lot of press lately, some of which is true, some which isn’t, and some is a mixture of the two. Individuals with Asperger’s usually have good “surface” language skills. They reach the language milestones at a fairly typical rate. That would be words by age two and phrases by age three (Mayo Clinic, 2010). As they get older and communicate, it becomes evident that there is an awkwardness when they talk. They do not understand the natural give and take in conversation. Often times, their conversations are one sided and many times about only the thing(s) that they are interested in. The listener might become bored and attempt to change the subject, and yet the Asperger’s individual never notices this. This type of behavior goes along with their inability to accurately read people. These individuals many times will have poor eye contact, a rigid voice tone, and not understand empathy or to be sensitive to others feelings. They might appear awkward and seem to have poor coordination. The general public has often described Asperger’s individuals as “quirky”.

Another subtype of ASD, is Autistic Disorder. The DSM-IV describes Autistic Disorder as “abnormal or impaired development in social interaction and communication, and a remarkedly restricted repertoire of activity and interest.” (Autism Society, Diagnostic Classifications) There is no medical test that a child can take and instantly be diagnosed with Autistic Disorder, although parents will usually observe that their child, at a young age, is not developing like their more typical peers. In order to be diagnosed a child is observed to see if he/she meets a set criteria of impairments in socialization, communication, and activity and interest, as I mentioned earlier. Autism is a spectrum disorder. This means that an individual can fall anywhere on the spectrum, some cases being more severe than others. Some children with autism that receive early intervention and intense training in language and communication, are able to function quite well, even with the impairments. These children are on one side of the spectrum. On the opposite end of the spectrum are children that are in their own world, and who do not communicate at all. Most children with autism will fall somewhere in between these two extremes.

Pervasive Developmental Disorder -Not Otherwise Specified, is fairly self explanatory. This Disorder is very similar to Autistic Disorder, in that they both effect a child’s ability to socialize and communicate. He or she also tends to have remarkable fixations on things that they like. The difference has to do with the age of the child at the onset of PDD-NOS. With autism, the diagnosis occurs when the child is fairly young. With PDD-NOS, the child is older. If all the other subtypes of Pervasive Developmental Disorders are ruled out, then a child might be diagnosed with PDD-NOS. Regardless of diagnosis, a child with PDD-NOS or autism should both be treated in a similar manner.

Another less heard of, subtype of Autism Spectrum Disorders is Rett’s Disorder. With Rett’s a child has normal prenatal development, and normal development through the first five months of life. The infant also has normal head circumference. At some point the child loses the ability/skill he/she had to do purposeful work with their hands. He/she begins a characteristic hand-wringing type motion. Within a few years after the onset of this hand-wringing, the child will begin to lose their desire for socialization. Both their receptive and expressive language skills also diminish.

Finally, the last subtype of PDD that I will talk about is, Childhood Disintegrative Disorder. In this particular disorder a child would have normal development for at least the first two years of their life. After birth he/she had age appropriate verbal and nonverbal communication skills as well as age appropriate social skills. He/she also had age appropriate play and adaptive skills.

A child might have CDD if there has been a clinically significant loss of acquired skills, before the age of ten years, in at least two of these areas: receptive or expressive language, social skills, play, motor skills, or bowel or bladder control. At this time there are also significant impairments in socialization, communication, and repetitive activities. In order to have this diagnosis all other PDD diagnoses must be ruled out, as well as schizophrenia.

Regardless of what type of Autism Spectrum Disorder a child has, one can be fairly certain that the child will be affected behaviorally, socially, academically, and emotionally. The behavior of children with ASD can vary, from very good to dangerous outburst and meltdowns. Anyone that has a child, or has worked with a child that has an ASD, knows about meltdowns. The child loses any perspective, tantrums, yells, and might spit or hit or even go completely limp and refuse to move. Many times the meltdowns happen because of a break in routine, not getting his/her way, having to wait, or possible sensory overload. The best way to deal with meltdowns is to try to avoid them to begin with! Preventative measures are the best line of defense against uncontrollable meltdowns. Socially, ASD children are awkward. They are behind their more typical peers in having meaningful friendships, or peer interactions. They will say inappropriate things, or perseverate on topics of their choice, not being sensitive to the wants or desires of the other person. They tend to be very egocentric. Academically, a student with ASD will struggle. They might have something that they really enjoy discussing and know much about. For example, a student that loves words and reads the dictionary because that is his “thing”, would love spelling class and probably do very well on the tests. He might not be as excited about math and the abstract concepts that go with it. He might act out during math because he is confused and does not know what the expectations are in that class. Emotionally, those on the spectrum can be distant. Having empathy for others is something that they struggle with. This type of thinking must be taught and practiced. As children become teens and young adults, statistics tell us that depression and thoughts of suicide can become more common in those with ASD. (Autism Help, Depression, Suicide Risk and Autism) The communication difficulties that these young adults have can be a problem when working through depression.

How do children acquire Autism Spectrum Disorders? That is a loaded question and one for which I wish I had the answer. There are many theories out there, but frustratingly no definitive answers. There are many people that have many different ideas on why children have autism. Some partial theories conclude that there is more accurate diagnosing of children. What once might have been diagnosed as developmental delays, or even mental disorders such as schizophrenia, are now making more sense as an autism diagnosis. Some people believe that an excess of vaccines on immature immune systems is what is to at least partially blame for the sky rocketing epidemic of autism. Many families have decided it is in their childrens best interest to not get vaccines, or at the very least to space the vaccines out over a longer period of time. Others believe that autism has a genetic link. Researchers, medical doctors and PhD’s at Brown University have studied genetics in the autism diagnosis. They say that, “Autism is a heterogeneous neurodevelopmental disorder that affects people of all races, ethnicities and backgrounds and is about four times more prevalent in males.” (Johnson, Gaitanis, Morrow, 2011, p.124) They go on to say “Genetic research has recently revealed that about 10% of autism diagnoses can be subtyped according to genetic abnormalities.” It was interesting that, “Rett’s Disorder is the only ASD with a known genetic cause: it is an X-linked, Mendelian disorder caused by mutations in the MECP2 gene.” (Johnson, Gaitanis, Morrow, 2011, p.124) Genetic research is valuable because it can allow for earlier detection for those with ASD. The earlier an ASD is detected the earlier interventions can be started. This is good news, in that early intervention is crucial for success for any child on the autism spectrum.

Although all children are unique in their own way, I have tried to show in this blog post some of the characteristics and commonalities of children with Autism Spectrum Disorders. Even though researchers, doctors, educators, and parents don’t all agree on every aspect of ASD, most do agree that more research is needed in order to better understand ASD and what can be done to help those affected by it to lead a more productive and happy life.

Autism, PDD-NOS & Asperger’s fact sheets | Depression and suicide risk with Asperger syndrome and Autism
http://www.autism-help.org/family-suicide-depression-autism.htm

Autism Help. (no date). Depression, Suicide Risk and Autism. Website.

Autism Society – Diagnostic Classifications
http://www.autism-society.org/about-autism/diagnosis/diagnostic-classifications.html

Autism Society. (?) Diagnostic Classifications. website: http://www.autism-society.org/about-autism/diagnosis/diagnostic-classifications.html

Autism Society gives diagnostic classifications of Pervasive Developmental Disorders.

CDC – Data and Statistics, Autism Spectrum Disorders – NCBDDD
http://www.cdc.gov/ncbddd/autism/data.html

Centers for Disease Control and Prevention. (2013) Autism Spectrum Disorders (ASD’s). http://www.cdc.gov/ncbddd/autism/data.html

  • according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network

Hall, L.J. (2013). Autism spectrum disorders: From theory to practice (2nd ed.). Upper Saddle River, NJ: Pearson Education.

Explains typical language development.

Genetics in Autism Diagnosis: Adding Molecular Subtypes to Neurobehavioral Diagnoses
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3140003/

Johnson,H. Gaitanis,J.MD. Morrow E. MD.PhD. (May 2011). Genetics in Autism Diagnosis:Adding Molecular Subtypes to Neurobehavioral Diagnoses. Medicine and Health/Rhode Island Volume 94. No.5 .website:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3140003/

This paper is about autism genetics research.

Asperger’s syndrome: Symptoms – MayoClinic.com
http://www.mayoclinic.com/health/aspergers-syndrome/DS00551/DSECTION=symptoms

Mayo Clinic. (2010 November 18). Asperger’s Syndrome. website: http://www.mayoclinic.com/health/aspergers-syndrome/DS00551/DSECTION=symptoms

Symptoms of Asperger’s Syndrome

Autism: Symptoms – MayoClinic.com
http://www.mayoclinic.com/health/autism/DS00348/DSECTION=symptoms

Mayo Clinic. (no date). Health / Autism. Website: http://www.mayoclinic.com/health/autism/DS00348/DSECTION=symptoms

Rain Man (1988) – IMDb
http://www.imdb.com/title/tt0095953/

Rain Main (1988) starring Dustin Hoffman and Tom Cruise.

This movie is about a young man and his brother, who is a savant.

Autism Spectrum Disorders Symptoms, Types, Causes, Treatments
http://www.webmd.com/brain/autism/autism-spectrum-disorders

Web MD. (2013). Autism Spectrum Disorders Health Center. http://www.webmd.com/brain/autism/autism-spectrum-disorders

General knowledge of the subtypes of ASD.