The Start of a New Autistic Journey

 It’s been a long time since I’ve last written here.  Just over six years.  A lot has happened.  Since my last post I got married, moved from Michigan to Massachusetts, and welcomed my daughter Every in December 2019.

Last week, at just over two years old, Everly was diagnosed with Autism Spectrum Disorder level two.

My wife Jackie and I have been expecting something like this and are grateful for this diagnosis.  The reason we are grateful is now that Everly has this diagnosis, we qualify for the insurance covered support that she needs at this time to overcome her roadblocks and reach her full potential.

Everly is a sweet, usually well behaved toddler.  She loves to be around us and is a big time daddy's girl.  She loves to be helpful.  I can hand her small items and say something like "take it to mummy" and she runs to Jackie, giggling with a big smile on her face.

There are things related to the autism that my wife and I have noticed:

1. Everly does not like open doors.  Anything open that is usually closed including the fridge, closet, dishwasher, etc will need to be closed by her to that it restores her sense of normalcy in the world.  I've lost count the number of times I'm trying to get something out of the fridge only to have her try to close the door on me.

2. She has precise sequences when she plays with her toys.  Such as, when she moves her blocks from one container to another she is totally focused.  There have also been times when she has lined up mega blocks in a straight single file line from one side of the room to the other.  During Everly's autism evaluation which took place remotely over a zoom meeting, my wife was instructed to engage Everly while she was moving her blocks.  The evaluator later commented that she could tell Everly wanted to engage with my wife but was frustrated because the autism was directing her to finish her self appointed task of moving the blocks from one surface to another. 

3. There are only 3 tv shows that she will watch obsessively at this time.  These are Little Baby Bum, Bluey, and songs for littles.  We’ve tried to get her into other shows without success.

Going back to the diagnosis, the reason Everly received ASD level two is because she is non-verbal at this time.  We were instructed to start Applied Behavior Analysis (ABA) 25 to 30 hours a week.  

As of right now we are waiting to be assigned an ABA professional who can make house calls to work with Everly.  Once we get into an ABA routine I’ll update you guys to let you all know where we’re at.

Take the Focus off Autism

Those on the autism spectrum are known for their hyperactive focus. This is the sort of focus which impedes with the perception and interaction of the surrounding world.  Now, employers such as SAP are recognizing the potential value of these individuals with autism and filling tech positions with those on the spectrum.  However, the reason this works is not because the focus is placed on technology rather than autism.

Let me use another example that is a foremost struggled faced by those with autism: relationships.  Particularly, romantic relationships.  This is something that many on the autism spectrum long for and ultimately struggle with.  Please view one of my most popular blog posts on the subject to see how I felt about this issue three years ago.  Of course, that was before I met Jackie.

Jackie and I met through the popular online dating site Eharmony.  We're getting married next summer.  We've lived together for more than a year in our own apartment.  We both are a vital part of making our relationship work.

She knows I have autism.  I told her a few days after we started talking.  She has two cousins who are more severely autistic than I am.  Since she used to babysit her cousins, she is very familiar with autism.

She accepts me for who I am as an individual on the spectrum.  Her feelings on the subject is that autism is simply another way of being.  Just like there are different races and cultures, autism is simply a different neurological state.  I'm really lucky to have her.

In our day to day life, autism never really comes up anymore.  Our focus is on our respective jobs, keeping up with household chores, our respective families, and planning our wedding.  The topic of autism might come up if we have difficulty communicating or don't see eye to eye on something.  Other than that, our focus is not on autism, it's on each other and it's on the world around us.

One thing to really keep in mind about autism that as a spectrum disorder, there are correlations between those on the spectrum but what solves one person's problem is not guaranteed to solve the same problem for another person.  I'm not saying my approach to my relationship and upcoming marriage will work for all.  I'm only mildly affected by the spectrum unlike many others.

To make a relationship work, or to make an employment opportunity work with a company such as SAP, the focus should not be on autism.  The focus should not be on the behaviors or characteristics that make someone autistic.  Rather, the focus should instead be on the interests that can translate into employable skills.  Or in the case of relationships, the focus should be on making day to day life work with your boyfriend, girlfriend, fiance, husband or wife.

Do you have any feedback on the topics discussed above?  Perhaps you have a story where the focus was taken off of autism?  How did that change things?  Leave your comments below my friends and don't forget to tell others about the Voice from the Spectrum!

It's Been a While...

It has been quite some time since I last wrote in this blog back in October   A lot of things are different now in my life.  In November, I moved into my own place and I've been living independently since that time.   Also in November, I proposed to my girlfriend and we are planning our wedding for July 2016.

Back in February, I started work in a internet marketing call center and I've been doing quite well.  Being on the autism spectrum, I never pictured myself working in a call center and while it's been difficult at times for the most part it's going well.  Everyone I trained with at work knows I'm on the autism spectrum and have been quite accepting.

For my new job, I have to commute an hour one way to work.  This means I work eight hours and drive two hours a day.  My autism podcasts have stopped and I also had to quit teaching for OUCARES.  I have also stopped playing the clarinet in the New Horizons Band. There are too many things going on now.  I do miss teaching, band, and hosting my shows.

What with living independently, preparing my wedding, and working full time I'm not thinking that much about being on the autism spectrum.  Instead, I'm focusing instead on the rest of my life.  I think that's the way it should be.  It's better to focus on what can be done instead of what can't be done.

On the flip side, I also am learning that in the midst of day to day life with responsibilities wearing down, it can be difficult to heed the advice of someone far removed from those difficulties.  That being said, I wonder what value my words have provided those struggling with far more autism related trials than I am facing.

This is one reason why I am not advocating for autism as much as I used to.  It is wearing to be a self advocate for autism at times.

Teen with Autism Crowned Homecoming King

High school is often a difficult time for individuals on the autism spectrum.  While everyone struggles during their teenage years, those with social difficulties tend to struggle more than others with a strong desire to fit in and a lack of knowledge of how to do so.  However, there are inspiring stories out there of high school communities that have embraced individuals on the spectrum and given them experiences that they will be able to recall with fondness for the rest of their lives.

John Toriello, a high school senior with autism, was crowned homecoming king at his Pennsylvania high school, the Ridley Raiders.  A highly passionate Raiders fan for the past three years, Toriello has not allowed the social difficulties associated with his autism to stop him from contributing to his team during high school.

John's mom is quoted in the article stating that the football team has included him as though he is part of the team.

To read more, click here:

http://www.foxnews.com/health/2014/10/13/autistic-student-crowned-homecoming-king-at-pennsylvania-school/

Celebrate the Arts at Acting Antics

Last month, I was invited by fellow autism advocate, Dani Bowman, to teach animation for Acting Antics in Frazer Pennsylvania.  For one week, I led the class where a dozen students created their own animations using Flip Boom Allstar.

Acting Antics was founded in 2007 by Cindy Schneider.  Cindy brought more than 20 years of special education experience and a love of the arts to life with a number of annual sessions that take place throughout the year.  Other than animation, there are classes offered for theatre, improv acting, and dancing.

For more information about Acting Antics, visit their website at www.actingantics.org.

Cindy Schneider has also written a book about teaching drama to individuals on the autism spectrum.  This book in available on Amazon.  Just click here.

Here are some photos from the Acting Antics Animation Program:

Ten Tips for Summer Travel

With summer fully upon us, many families are now preparing to take a little time off work to perhaps travel somewhere new and exciting.  However, for families with one or more members on the lower functioning end of the autism spectrum, the prospect of taking a family vacation may seem daunting full of hassle.  There are still ways to find the enjoyment and relaxation many families find vacationing during the summer months as long as certain precautions are followed.

The Family Travel Forum has prepared a list of ten tips for vacationing with a child on the autism spectrum, which I have listed here:

1. Alert airlines and hotels ahead of time.
2. Make sure your child is comfortable with airplanes.
3. Safety First (Make sure hotels know about specific dieting needs and other necessary. accommodations to give them the opportunity to prepare for the specific needs of your child).
4. Authorized letter from your child's physician identifying disabilities and needs.
5. Be prepared (for the unexpected).
6. Be creative (in order to maximize engagement your child during the trip).
7. Know your child's likes and dislikes.
8. Focus on your child's strengths.
9. Stick to your (daily) routine (as much as possible).
10. Plan for the whole group.

For more details about these ten tips for traveling with a child on the autism spectrum, click here.

Stranger Replaces Stolen Bike for Teen with Autism

Kindness is an often understated virtue which nevertheless has a far greater impact than what can be perceived.   Tyriq Gordon is a fourteen year old boy with autism who lives in Vancouver Canada.  He loved to ride his bike...until it was stolen from him.  His mother appealed to the community, requesting that Tyriq's bike be returned.  This story received international attention and prompted a certain Dennis Wong into action.  Also a resident of Vancouver, Wong purchased Tyriq a new bike and delivered it to the ecstatic family.  This act of kindness within a global community can have an undetermined positive impact in the world.  Who can say what further kindness has been prompter by this single act of good faith.

To read more about this story, click here:  http://www.autismspeaks.org/news/news-item/kind-stranger-buys-new-bike-boy-autism.

Autism Insurance Battle in North Carolina Senate

Insurance companies and autism advocates are at a gridlock to determine the fate of a bill passed in North Carolina which would mandate insurance coverage for those on the autism spectrum.  This bill would extend existing coverage to include applied behavioral analysis, which is "the most common" form of treatment for those on the autism spectrum.  While the bill has been passed in the House, it is now being considered by the senate.  Blue Cross along with the N.C. Farm Bureau are actively lobbying against the passage of this bill, showing reluctance to accept new mandates due to concerns related to the Affordable Care Act.  To read more about this bill, click here.

Here is a list of states that have previously passed laws mandating insurance coverage for those on the autism spectrum (source found here):

Alabama

Alaska

Arizona

Arkansas

California

Colorado

Connecticut

Delaware

Florida

Illinois

Indiana

Iowa

Kentucky

Louisiana

Maine

Massachusetts

Michigan

Missouri

Montana

Nevada

New Hampshire

New Jersey

New Mexico

New York

Oregon

Pennsylvania

Rhode Island

South Carolina

Texas

Vermont

Virginia

West Virginia

Wisconsin

Vacuum Drawing Sparks Social Media Frenzy

Over the past few years of advocating for autism, I have come to know quite a few talented artists who are on the autism spectrum.  While I have not met Marcus Bartlett, I feel compelled to share his story which has received quite a bit of attention on social media in recent times.

Bartlett is an 18 year high school senior from Missoula, Montana.  One of the many drawings he has created contains a pink Hoover Vacuum.  Many individuals on the autism spectrum have interests about which they know a great deal.  Since he was ten years old, Bartlett has been fascinated in Hoover Vacuums.  This has been directly reflected through his artwork.

A few months ago a paraprofessional who works with Bartlett, Kathy Howlett, mailed one of Bartlett's drawings to Hoover Headquarters.  The drawing was, in turn, featured on Hoover social media which sparked an online frenzy.  Over the intervening time, the pink Hoover vacuum drawing, and Bartlett, received worldwide attention.

The end result of all this was Bartlett received a surprise from Hoover.  They had created a custom vacuum matching what he had drawn and sent it to him.  The vacuum was presented to him during a school assembly, along with a coloring book which chronicled the events that were sparked when that drawing was sent to Hoover.  Bartlett has used this publicity to advocate for autism.

To read more about Bartlett and his Hoover Vacuum, click here:

http://missoulian.com/news/local/autistic-and-artistic-missoula-grad-gets-custom-hoover-after-drawing/article_670f0330-f292-11e3-8f2f-0019bb2963f4.html 

My Insights Teaching Those with Autism

It has been more than two months since I last wrote in The Voice from the Spectrum, which I am sorry for.  Starting now, I'm going to try to get back to writing three posts every week.  Since my last post on March 27th, I have traveled to England to meet members of Positively Autistic

And started teaching teens and adults on the autism spectrum. (Here is some information about our upcoming summer session):

As the assistant instructor, I am not in charge of the lesson plan.  Instead, I am the program's "autism expert."  On the first day of class, I sat nervously in a seat as the class began to file in.  One of the students was upset and showed reluctance to enter the classroom.  It was a new experience for him and he was experiencing sensory difficulties.  His mom was having some difficulty controlling him.  I spoke to him, locking eyes (which is quite unusual for someone on the spectrum) stating that I was on the autism spectrum too, that it can be difficult sometimes but we have to keep going forward.  I also said to give the class a chance and you may be surprised with what happened.

This connection I formed with this student lead to a dramatic, and seemingly permanent, change in his behavior.  Ever since that time, he has come to class communicating with Stefan, myself, and his classmates about his interests while gaining skills in graphic design and Photoshop.  During which, he has explained a great deal about his various interests.  From what his mom said, this student was improving in other areas of his life too.  She asked me a few weeks ago if I would continue to be a part of this program and I said yes.  She answered with "good, we need you here."  Those on the autism spectrum can seem impossible to relate with at times but it only takes a moment for the right kind of connection to make all the difference in the world.

1/68 Diagnosed With Autism?

Recent reports indicate that the autism diagnosis rate in the United States has risen again.  Two years ago, 1/88 U.S children were being diagnosed with autism.  Now, experts are claiming that 1/68 U.S children are being diagnosed with autism.

I have to say that I have mixed feelings about this autism diagnosis increase.  Growing up with Atypical Autism, I felt isolated from others affected by autism.  That was before social media.  Since then I have been introduced to the autistic social media community and have seen firsthand how those affected by autism are so adamantly divided on what should be done about this increase in children being diagnosed with ASD.

The last thing I want to do right now is claim that I know what to do about this increase in autism because I have no idea what should be done.  Even though I am on the spectrum, I can only speak for myself and cannot pretend to understand what is going on inside the mind of someone who is severely affected by this condition.  It was not easy for me to accept this, because I thought that as someone with an autism diagnosis, I would be given access to the world of those with lower functioning autism.  I was wrong by believing this.  The fact is that they are dealing with something that is completely different than what I am experiencing.

Also, I have seen a growing number of people who disapprove of large autism organizations like Autism Speaks, claiming that these organizations do not speak for them.  Of course Autism Speaks is not going to speak for everyone on the autism spectrum because everyone on the spectrum is so vastly different from one another.  They are also going to make mistakes.  All large organizations make mistakes because it's impossible to get so many people working together toward a common cause and not have individuals within this organization who make mistakes at some point.  These are just my feelings but the autistic community should not be attacking Autism Speaks for focusing their efforts on those with lower functioning autism, or in other words, for trying to help those on the spectrum who need the most help.

Today, I disassociated myself from an autism advocate who kept asking me to attack Autism Speaks.  My reason is that I don't want to be associated with such a hate-filled message.  My mission as an autism advocate is to spread acceptance rather than hate.  I do not want to use my writing talents to attack Autism Speaks and because this person would not back down, they were removed from my network.  What sort of message does the autistic community send to the rest of the world when we fight among ourselves?  We want the rest of the world to understand us and yet we do not understand others who are affected by autism like ourselves.  There are so many clashing viewpoints about autism that I am not certain what will happen next as a result in this latest increase in autism diagnosis rates.  I only hope we can try to promote understanding and acceptance rather than trying to spread hate.  The world has too much hate already...

To read more about this increase in autism diagnosis, click here:

http://www.cnn.com/2014/03/27/health/cdc-autism/index.html

Social Media Connects Those Affected by Autism

The National Autism Network provides social media services catered specifically to those on the autism spectrum as well as parents and caregivers.

I took a few minutes to join the National Autism Network.  Apart from the pages loading slowly, I did not have any trouble at all.  Once I was a part of the network, I found that I had access to a number of different resources all related to autism spectrum disorders, such as current events related to autism, state legislation and much more.

Pricing options include a basic plan for free.  There are certain features of the site, such as access to webinars and the creation of a blog that are only available to paying users.  Payments are processed either $9.95 monthly, $99.95 annually, and $149.95 for lifetime use without the need for renewal.

For more info, click here: http://www.onlinesocialmedia.net/20140304/national-autism-network-social-platform-without-set-up-restrictions/

To join the National Autism Network, click here: www.nationalautismnetwork.com.

Mother's Request for Birthday Wishes Goes Viral

A Michigan boy with autism has received global attention in the past week for a simple reason: he thinks that no one cares about his 11th birthday.  His mother was heartbroken when her son Colin told her that he didn't want a birthday party because he had no friends.  Without telling Colin, his mother appealed to Facebook users who have responded magnificently.  Her plea has gone viral, resulting in more than a hundred thousand birthday wishes that flood in every passing minute.  Colin's birthday is on March 9th and he has no idea any of this is happening.  Visit his Facebook Page to wish Colin a happy birthday!

For more information, click here:

http://www.clickondetroit.com/news/michigan-boy-who-thought-he-had-no-friends-getting-global-attention/-/1719418/24416736/-/d1susc/-/index.html

Autistic Teen Asks Ellen DeGeneres to Prom, Receives Community Support

It is truly unfortunate that there are those, on the spectrum and off, who feel that they are alone even though they are in fact surrounded by friendly, loving people.  Yesterday, someone I used to work with committed suicide.  I never really spoke with her that much but it is clear that she was loved because of the number of people who have been hurt by this loss.

This story proves that there is always hope, no matter how alone or disconnected you might feel.  Esteban Barriga, a teen with autism from Maynard Massachusetts, told his mother that he was not going to his high school prom because he had no friends.  He eventually changed his mind and decided who he wanted to ask to accompany him on that special night...talk show host Ellen DeGeneres.

Although this seems like a tall order to achieve, it has helped Esteban see one thing in his life that he did not see before.  From the amount of support he is receiving from his classmates and his community, he has surely seen all the friends that he does have in his life.  Whether or not he actually reaches Ellen DeGeneres is irrelevant.  He's already proven his earlier statement wrong.  Esteban does indeed have friends who are willing to help him make his dreams come true.

To read more about this story, click here:

http://www.huffingtonpost.com/2014/02/04/esteban-barriga_n_4724602.html?ir=Good+News

My Interview with a Recognized Member of the Autism Community

If you missed my interview with Joanne Lara, founder and CEO of Autism Movement Therapy and producer of the new documentary "Generation A: Portraits of Autism and the Arts", click here to listen now:

http://tobtr.com/s/5973911

A Fundraiser for a Good Cause

Those who have been following The Voice from the Spectrum for a long time will know of my involvement with Positively Autistic.  For those who do not know, since February 2012, I have been hosting a podcast for an international autism awareness charity based out of Newton Abbot England.  In April of this year, I will be traveling to England to meet members of Positively Autistic who I have communicated with through Facebook for the past two years.  This exciting trip is unlike anything I have ever done before and I find myself feeling a mixture of anticipation, anxiety, and excitement.

In April 2012, I began working with another member of Positively Autistic who lives here in the United States.  Marilyn Francis hosted Positively Autistic: The Poet's Interest with Marilyn and Ryan with my assistance as co-host.  Marilyn is truly a credit to Positively Autistic because she was able to connect to some wonderful people who worked to raise autism awareness through poetry while caring for her severely disabled daughter.

When we first came up with the idea for the England Trip in September of this year, Marilyn had already been planning to travel to England for some time to see members of Positively Autistic and had already put some money aside to cover the expenses.  However, a most unwelcome tragedy took place.  Marilyn's daughter Leslie, who was severely disabled with cerebral palsy passed away near the end of September.  Leslie's passing ripped a hole in Marilyn's already fragile life.  The expenses in the following months wiped out Marilyn's saving so she can no longer afford the England Trip.

That's why, with the help of Joe Westlake, co-founder of Positively Autistic (an exceptionally driven young college student), we created a fundraiser on gofundme.com to help Marilyn participate in the England trip.  Our goal is to raise $2500 by mid-march to help Marilyn pay for the flight to and from England (which cost me more than $1000) and help cover additional costs that may come up during the duration of the trip.  I am not one to ask for monetary support but Marilyn really needs whatever help you can give her.  I spent most of my show last week discussing the fundraiser with Joe Westlake and as of right now, we have not received any donations.

To find out more about this fundraiser, please click here:

http://www.gofundme.com/5zxyw8

Media usage linked to Sleep Deprivation

Sleep is important to healthy development and growth for children.  A study performed by the University of Missouri has linked the use of easy-to-reach technology and media to less sleep for boys with autism.  I myself am guilty as charged.  Last night I could be found surfing the web on my phone which I charge within reach of my bed.

The study revealed that this not only a problem related to autism but with the general population as well. While easy access to the world wide web has solved many problems, it has clearly created some new problems.

During the study, boys parents of those with autism as well as parents of NT boys were surveyed to determine how much time per day their children use media.  They found a link between bedroom access to a TV or computer and lack of sleep.  There was a much stronger correlation between boys with autism and lack of sleep due to media usage.  Members of the research team stated that further research was needed to see what processes might contribute to lack of sleep in boys on the autism spectrum.


Parents, is your son with autism getting enough sleep at night?  Does he have easy access to media in the place where he sleeps?

For more info about this study, click here:

http://psychcentral.com/news/2014/01/03/media-screens-in-bedroom-tied-to-less-sleep-for-boys-with-autism/64038.html

If You Missed My Show 1-2-14

If you missed my podcast on Thursday, January 2nd, you can listen by clicking on the link below.  My guest, Jake McCorry, discussed the difficulties of living on the autism spectrum and being gay.

Use this link to listen:

http://www.blogtalkradio.com/positivelyautistic/2014/01/02/junior-positively-autistic-ryans-spectrum-talk 

Teacher Training in Autism Care Vital for Success

Here is a heartwarming story where the difficulties of high functioning autism were solved early enough in a child's life to enable her to make the best use of her education.  Seven year old Chloe Burton thrived in kindergarten but started to go downhill in first grade.   She wandered the classroom instead of performing work likely because the significant change in routine between kindergarten and first grade.  The problem was that Chloe's teachers at the time were not trained in handling autism so they disciplined her for not getting her work done.  They prevented her to go out for recess and insisted she use the time to get her work done.

The frustration Chloe felt is something that many people on the autism spectrum know all too well.  The discipline used by the teachers did not help the situation and instead nursed anger within the young girl.  She lashed out at teachers and other students.   The problem was not Chloe but the way the teachers were presenting their instructions.  Chloe's parents settled with the district and moved her to a different school where the teachers were trained to handle autism.  The difference is remarkable.

These new teachers knew how to break instructions down into steps so that Chloe could follow and understand every part of the process and she is thriving.  Positive reinforcement was used instead of punishment and extra time was given to complete assignments when needed. The situation would have been very different if Chloe's parents had followed the advice of the untrained teachers and placed Chloe in a unit alongside kids with behavioral problems.  That being said, training teachers in handling autism can really make all the difference in the lives of those on the spectrum.  Many children and families have gone through unnecessary grief that could have been resolved if the proper knowledge was applied.

For more information about this story, click here:

http://kuow.org/post/six-months-later-girl-autism-thrives-trained-teachers

My Autistic Journey: Part II

Here is some info about me:

• I was born April 28th 1988.
• When I was two years old, my language skills degraded.
• When I was three, I regained my ability to speak.
• When I was nine, I was highly impulsive and destroyed another student's textbooks in Catechism class. Earlier that same day I was disciplined at school for throwing snow at another student.
• When I was eleven, I received detention for not keeping up and had a teacher tell me "see, you know what you need to do, why don't you just do it?" I didn't have an answer I could give.
• When I was twelve, I was taken out of school and hospitalized for four weeks while I was diagnosed with atypical autism and treated for depression.  During the following months, I received an "F" in an elective computer class.  It was the last time I ever failed a class.
• When I was thirteen, I was enrolled in all special education classes and had begun to slowly regain my self esteem.
• When I was fourteen, I made the honor role for the first time.
• When I was fifteen, I attended my first school honor ceremony.
• When I was sixteen I had begun to mainstream into regular education science and social studies classes and was still ranked in the top 10 % of my graduating class.
• When I was seventeen, I was inducted into the National Honor Society.
• When I was eighteen, I graduated from high school with a 3.85 GPA.
• When I was nineteen, I received my first "B" in a college class after attending community college for a year.
• When I was twenty two, I wrote for The Oakland Press as a reporting intern while taking four college classes and working another job.
• When I was twenty three, I began to write this blog The Voice from the Spectrum, which has received more than 25,000 pageviews to date.
• When I was twenty four, I graduated from college with a 3.35 GPA as a member of Alpha Mu Alpha marketing honor society which required a recommendation from a professor.

• Today, I received this in the mail: